Thursday, December 30, 2010
I couldnt even drag myself onto facebook and just check his profile, just in case, when i worried about getting no texts? fuuuuuuuuuuuuuuuuuuuuuuck.
What a sad sad thing. Breath Easy now Jonny, I loved you man and I wish I'd gotten through to leave my message to you sooner. Sorry honeybun
Wednesday, November 17, 2010
- Azithromycin tabs
- Minocycline tabs
- Cipro tabs
- Chloramphenicol tabs (this one even sounds dangerous to me!)
- Temocillin IVs
- Tobramycin IVs
- Meropenem IVs
- Colomycin nebs
- Tobramycin nebs
And I've been wondering why my poor tum is acting up even more than its usual? Im a ticking friggin timebomb. Guessing there are serious casualties on the "friendly gut bacteria" front. Pity my chest is getting worse all the time! I'm on oxygen overnight now (the damn machine makes my room a sauna) but still feel heavy and have splitting headaches, I've been on IVs almost without a break for months... Its so tiring. Im wondering whether there is any point when i still seem to be deteriorating? It's not like im getting any time to do any more than take meds, do treatments, and every now and then manage a sleep or snack. The chloramphenicol is a last resort from what the docs said, anyone else got any experience with it? It makes my mouth/nose/chest gunk taste like a bastard along with a hundred other shitty side effects. Im thouroughly fed up by the way.
Anyway I managed to get my memory card photos onto my laptop so maybe i'll treat you to a few.
...Or maybe not?!
can anyone help me on why I'm not being allowed to copy and paste text from one internet window to another? ie. from photobucket to blogger? It happened when i tried to post something earlier but i assumed it was a problem with the other site, apparently not. I highlight and copy, but paste is just not an option when i go over to the blogger window! help? :S
ahh. here we go...
My First cupcake exploration with Jordanna, back in September!
the big pinks and whites were vanilla and the lil flat ones in the back there were out of a tom and jerry pack, strawberry sponge, yum... :S
Me at Mumma bear and Paul's wedding :)
lookin skinny fingers, and slightly swollen in the face but the rule was no photos of the knees down as my calves were like bulging jellies and wouldnt go into tights, shoes, etc!
Disney Land Paris
we 3 siblings onnnn Its a Small World i think? fun but a real show made of being lifted into th eboat for me so i felt like the spectacle heh.
and everyone but me stocking up on energy supplies (fries and hotdogs)
Friday, October 29, 2010
I can't get that out of my head?
How are you all out there?
Tuesday, September 28, 2010
To be fair I have had a couple of okay days, I managed to bake cupcakes with Jordanna which was mighty fine :)
But mostly I have been rotting in a hospital bed. They just cant fix me.
A lovely bunch called the Bosdet Foundation over here have bought me my very own shiny new laptop! And I am now also equipped with a dongle so internet access in hospital is now possible almost always :D very happy about this.
Mainly I'm feeling rather guilty that I have no idea what's going on with anyone! And here I'm meaning with my "real-life" friends as well as bloggy and CF friends. So I ask you please would you comment and update me? With your own news and anything else I should know? I'm so scared I'm missing something, that someone is really ill or something?
Love you guys. xx
Tuesday, August 10, 2010
It's only back to the hospital, I'm just not strong enough for home - I'm not strong enough to get further than the loo without a wheelchair! - but at least I might be able to have a few visitors, and they can bring me foooood :D
And that's about all I have to say I'm afraid! Sorry to bore you. I've been having small amounts of feed into my RIG, (not PEG, but basically the same thing I'm told...or have I said this already?) just half a Fortisip twice a day...it's making me feel really full and bloated, but it's a start and hopefully once i'm back to normal and moving around more etc. I will be able to tolerate more and so be able to get more than a measly 300 extra calories. Im definitely still down on my weight though its hard to tell because of all the swelling and fluid retention - I'm showing as around 39kgs but I think im probably still more like 33ish...my watch nearly fell off my wrist today it's so loose. Which is a bit of a worry.
I had another lung function today which came out at 21-22% again, so no real change, which is disappointing but not really surprising. If I don't have a transplant I could possibly carry on at this level for a couple of years, and I'll be trying bloody hard! But equally things could so easily go downhill too quickly to pull back...I'm feeling quite scared for the first time. I've never been scared of dying but since I've always seen 20% lung function as a sort of cut-off point - you either get transplanted or you're on your last legs, or something like that, for some reason - maybe it's just hitting home a bit.
The docs took me off oxygen yesterday afternoon and my Sats stayed around 94% which is about reasonable, so I thought I was finally free! But during the night they dropped to the mid-eighties which is less acceptable, so it was back to sore nose and oxygen tubing, and it looks like overnight oxygen may become a permanent fixture in my life. I'll have an official overnight oxygen test at some point while I'm in Jersey hospital to decide.
So there we go, I've babbled all my health news to you. I'm sure you found it riveting ;)
But this is for me to record stuff as well so *sticks tongue out at you*
Hopefully things will keep improving. Wish me luck - I don't want the routine of mother hen having to shower me to become permanent just yet please.
PS. Thankyou mummy bear, for being here and doing everything you do. I love you.
Monday, August 9, 2010
Tuesday, August 3, 2010
Also just to keep anyone who might be interested in the know, I've been told this morning that my PEG (feeding tube) will be put in late this afternoon- they just happened to be able to fit me in and my temperatures have been behaving in the last 24 hours so they decided to seize the opportunity and go for it! So wish me luck and hopefully it won't be too painful afterwards etc. :) Ta!
That's quite a shocking thing to hear at 18 years old when the same morning you've been talking to that same doctor about how desperate you are to get home and bake cupcakes, and she is agreeing with you about how definitely that needs to happen.
Jordanna this is what I wanted to talk about on the phone but the parents came back in the room and somehow I just couldn't talk properly with them there. I don't know if I would have been able to anyway though to be honest! :) i love you.
Friday, July 30, 2010
Thursday, July 29, 2010
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?
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
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.
Friday, July 2, 2010
Tuesday, June 29, 2010
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.
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.
Sunday, June 27, 2010
I'm a little calmer today... at least until I let myself think.
Actually, this evening breathing is slightly easier, and I'm so happy about that. I'm still struggling with the thought that I might be stuck fighting to breathe for any longer...to be honest when I woke up this morning and realised that I was still here and still having trouble, I had some very dark thoughts indeed.
But the little things, as always, have helped: Dad arrived this morning bearing gifts of Ribena and dvds. I am now the proud owner of a platinum edition Disney DVD of 101 Dalmations :) It's funny, plonk me in front of a Disney selection and 101 Dalmations would have been low on my list to pick, but I've watched it twice this afternoon and really enjoyed it- made me want to get a dalmatian doggy and call her Perdita.
When I was watching it, the computer went a bit crazy...one of the many programs that popped up was a webcam program. Now, I hadn't even noticed that this laptop HAD a built-in webcam (observant, yes), or i would have taken a photo a few days ago to give you all a laugh at my hamster chops/moon face! But all the same, I thought I'd give you all a (not-so-)flattering peek into my world.
(the face is still slightly puffy)
My teddy is called Honey, he has been with me since one of my first visits to this hospital. We spotted an army of him in various sizes sitting in Smiths on the way in, and when I came round from my colonoscopy (fun!) he was sitting by my bed. Seven or eight years makes him quite a loyal friend i think, don't you? Especially considering all the tears he's dried! :)
Lastly a (hugely inadequate) thankyou to Victoria and Clare, both of whom I received packages from this week. Tori sent cupcakes and a cute soft toy dog, and Clare sent a box of special-ness that made me smile all day. It was super thoughtful. I'm so proud to call such lovely and generous people my friends. A lot of love to you two! ♥
Friday, June 25, 2010
Things are really not good.
The temperatures are back, my sats aren't improving, and every single breath is a fight at the moment. I'm swollen in my face, hands, feet, ankles, even my back if you can believe it! - it could be the prednislone but more likely my body is using up proteins faster than I can take them on, because of the infection. We just don't understand where this is coming from - I was on the up: infection being dampened down once again, CRP falling; albeit slowly, and BAM, I'm back at square one, or possibly worse.
And I'm really scared. To me, the worst feeling in the world is not being able to breathe - it's why I was so scared of the bronch, it's why I've spoken to my mum about the fact that if it can possibly be avoided I never want to be intubated - I don't want a machine breathing for me, however contradictory that may seem.
You might not know this about me, but I think about death...a lot. Like, on a daily basis, at least. Especially in recent months, since my health has become a more serious issue for me. I've had to realise that actually, I have a disease that will kill me, is killing friends and acquaintances and strangers as I speak. But I'm not scared of dying. In fact, I might even go so far as to say I'm interested! Okay, maybe that doesn't sound quite right. Maybe I want to be like Peter Pan, thinking, "To die, would be an awfully big adventure." I am however, scared shitless by what might come before. In the last weeks or days before "it" happens...how hard will it be to breathe? I have dreams about it: I'm breathing through treacle; oxygen is sucked out of me before I can use it; I'm drowning in myself. And the thought of that makes me so so afraid, so scared that I cry, for hours and hours every once in a while.
And I'm scared of what happens after.
What will my dad do, alone in his big house, with my bedroom empty, and all the "stuff" that makes up a life just sitting there useless? How will my mum cope with me not being around, or peoples sympathy?
I fucking hate this disease. I'm disgusted when I think about it. It makes me sick to my stomach to think of how CF is ravaging my body and the bodies of my friends, when it shouldnt exist at all, it's too much. Why should however many people each week or month or year die because they got unlucky in some genetic lottery, so they are sentenced to slowly drown in their own secretions?!
This is so fucked up.
Also affecting me and my mindset today is the news of another CF death, 7 year old Conner is now breathing easy, my thoughts are with all of his family and everyone who knew him. Reading his mother's blog has been especially raw for me in the last few days when I have been struggling so much myself, although of course nothing compared to what Conner has been going through, I just thank her for her honesty and openness. I think she is a very brave woman.
No matter what happens I will always be grateful that I have been allowed time to grow and experience some of what the world has to offer, I have become an adult. No-one should have that oppurtunity taken from them like Conner did, and I'm ashamed to say that I might not have remembered this if it weren't for Sarah's blog.
It's a rough read but if anyone wants to take a look - http://notsobrightandshiny.blogspot.com/
I'm sorry for the depressing subject matter. Trust me, this doesn't even scratch the surface of my thoughts at the moment, some of them are too scary to let out into the world until I can control them myself.
Wednesday, June 23, 2010
The past few days I have just been so desperate to get home and DO stuff. Especially creative-type stuff: my brain is over flowing with ideas and designs and techniques I want to try out! Once I do get back I'm probably going to make a crafty blog and separate my babble out a bit. I've recently acquired some beady followers (thanks guys!) but I don't know how boring or not they find my health complaints?! I don't know, maybe it's nice to have a bit of variety and I should keep it all together. But then if I manage to set up a shop and start selling my designs then it's not going to look too great for my jewellery posts to be mixed in with lung function news or rumbles about loneliness in hospital! Any thoughts here?
I'm looking forward to getting hold of my camera and posting a nice photo-heavy blog too! I know there will be some of Portugal, some of some jewellery bits, some "haul" type shots of the clothes and craft shopping I've been doing, and maybe an outfit or two? And I'm determined to have a bbq and catch up with some real people as soon as possible once I'm back on the rock so hopefully friends, summer dresses and Pimms will be swirled into the photo mix.
I think I fell asleep when I saw this in the cinema with my little cousins, so I'm excited that I am now the proud owner of a copy on Disney DVD. Though to be honest the second I stop concentrating my eyes are closing today, because of this damn cough last night! So it might take a few watches before I manage to get the entire story :)
There wasn't really much of a point to this blog, apologies for that.
Ooooh, are any of you lovelies able to knit or crochet?
As you might know they are some of the things I want to learn! And I was wondering if anyone could give any "starting out" advice. Not so much on actual technique, I have found myself a book which seems as though it will be quite useful, but more on say, what equipment is best to start with, etc? Needle sizes, wool weight, all that jazz? Ta in advance!
Monday, June 21, 2010
Also, my old and loyal friend India (sometimes referred to on here as Indie or Beau) - I always have an angel out there watching out for you, and especially on this day, I hope you know that, or at least remember it from now on. Love you, gorgeous xx
Onto this winning streak business!
Something so lovely happened yesterday :)
My dad flew over from Jersey to Southampton to keep me company in the hospital again for a few days. Because I had come over unexpectedly on the air-ambulance I had literally only a carrier bag of things with me that Paul (mother hen's other half, who is also very special and good to me by the way, <3...) had hurriedly thrown together, so Dad put together a little suitcase with some clean pjs and pants etc, so I can at least feel clean-ish and a little more human! He also brought post. eeep, yay! The first package to be opened was the one that Laura sent with the Lonelies beads I won. I knew what was in there but I was honestly so excited to open it, and I was not at all disappointed! The beads are all beautiful and perfect. They are a lot smaller (think, half the size) than i have always imagined her beads to be but that just added to the amazement at how delicate and detailed they are. Once again, thank you so much! And I will definitely be forwarding the love onward with a giveaway of something I make using some of the beads, though as I said previously, it may be a little while.
A second, MYSTERIOUS package was also there. With a sticker on the back showing the logo for the site Ollie and Nic. This was very curious indeed as though I have lusted over certain items on this site of cute-nosity, I have not yet placed an order. However, on opening the packet, all was revealed and became clear! A gorgeous handwritten notecard inside informed me that they liked my answer to a competition (i entered around 6 weeks ago to win a huge haul of makeup, mostly Benefit brand which i love) so much that I had been chosen as one of 8 runners-up! I had had to finish a sentence, and actually have a copy of the confirmation email so I can tell you all that my answer went: ONE BIT OF MAKE UP I CAN'T LEAVE HOME WITHOUT IS..."a really rich, smudgy eyeliner! Blacker than black in colour. You can create simple looks by just defining your eyes, making you look put together, or go sexy and sultry with dramatic smoky eyes. Plus if youre really stuck for a laugh it can also be used to create several styles of fake moustache to great effect! ;)"
So I'm guessing my strange brand of humour worked to my advantage here! Like I said, I didn't actually win the £170 worth of Benefit goodies, but the little leather keyring they sent was really lovely, and the fact that it was a surprise, they hadnt emailed to let me know or anything, really gave me something to smile about. I was so genuinely happy. And I just CAN NOT believe that after two years of entering every competition I see I have suddenly won two prizes in two weeks! I can't keep myself from exclaiming this out loud, I think father is getting rather bored of the same old tune, but I cant help it! I am like an excited child :)
So thanks also to the Ollie & Nic company!
*Photos to come when I get home to my precious camera. Yay!*
Question: Is it greedy to keep entering competitions when I see them now that I have won two prizes??
Health-wise, yet again I have more grumbles, it seems that every time I squint and manage to see getting HOME in the distance, whatever is out there realises and throws some other obstacle at me. I'm doing my best to keep climbing over them, but in all honestly, I don't want to be having to fight for every little thing for much longer! Yes yes, it's all about the climb, life's hard, etc etc... it just seems that most people squeeze in a break every now and then where they get to have things go smoothly, at least a little?! Don't get me wrong, I don't expect health and happiness to be handed to me on a plate: first off, I'm not that naive! But... it would just be nice if the pressure could lift, just slightly, just for a little while. For now I'll keep plodding on though I s'pose! :)
Technical-ish-ly, things seem to have in fact worsened rather than seeing improvements with my chest after the bronchoscopy on Friday - the temperature spikes continued but the doctors were not too surprised by that, seeing as they had probably stirred up all kinds of garbage in there. However once those had died down, they are more surprised to see that my sats are dropping ever lower, currently sitting around 82-84% when resting, and worse when expending energy or sleeping... and anyone who knows about me sats-wise will know that even when Im really poorly there have only been 2 or maybe 3 occasions where my sats dropped below 96-99%, and that was quickly rectified by 2 or 3 days of IVs tops. I'm now on day 13 (I think) of IVs and they are showing no signs of taking me off them any time soon. This morning I was started on a bunch of extra nebs, including one which I think is salbutamol which makes me trembly for hours, I hate it because I feel weakened, but if it's going to help by opening my airways then I have accepted taking it short term, they have also put me onto steroids. I'm not sure if it's that I'm tired but I can't even think how they help right now, can any of my CF friends advise on that? Ta.
I'm still a while from getting home I think, so mendy vibes would be appreciated please!-- as long as you cant think of anyone who needs them more urgently of course :)
I am however going crazy just sitting here on my oxygen and reading magazines alllll day, keeping fingers crossed that I might be allowed out very quickly tomorrow, and if I am then I am getting a taxi to HobbyCraft! I have never been to one but I am imagning it as seriously amazing, and the plan is to stock up on as big a variety of crafty bits as I can before dad leaves (tomorrow evening i think) to keep me busy afterwards. Oooh, does anyone know Southampton well enough to suggest any other good crafty places? Thanksss youuu
I'll end my babble here. Darnnn, it went past midnight, that makes me two days late! awwhh welll.
Much love xx
because i don't like to go too long without a photo. and because it's a damn cute kitty. and because i actually laugh at these moustache tatts :)
Friday, June 18, 2010
I also got a little packet of loving from India which gave me a smile! (Though it had got wet so some of the words you wrote were gone, Beau! deary me...) So thank you both so so much XX
Also I forgot to mention, with the beads that I won from Laura I will definitely make something to give away on the blog, pass on the love etc etc.
Like I said, it could be a while but keep your eyes peeled! :)
Today I woke up feeling a lot brighter and even planned to go out for a walk to Sainsbury's (with mum pushing me in a wheelchair still, it's about 3/4 of a mile away and I wouldn't even be able to walk that when I'm at my best to be honest)... But I wanted to get clean and have a shower first, for some reason my shower set off some sort of chain reaction of getting a temperature of over 104, desaturating fast, shivering, and becoming very drowsy... The doctors looked me over and also noticed that I have quite a bit of swelling in my feet, face, legs and torso. We don't know what happened but IV Paracetamols and oxygen for a few hours sorted me out a little bit, though I never did get to go out. Also they did another xray of my chest because they couldn't hear breathing sounds in one area, so were querying a collapse, and they did a bladder scan to check for something else, I think to do with the swelling. They didn't talk to me after that but didn't seem to be worried at the result so fingers crossed that's the end of that!
Looks like I'll be having a bronch tomorrow so please wish me luck because I am very scared.
Hope everyone else is doing better than me!
Wednesday, June 16, 2010
I do not win stuff, okay? This is so unbelievably unlikely that I actually thought someone was playing an elaborate and cruel prank on me. But no, it seems that I actually have won something, and it's really rather a beautiful prize! I can't wait to receive the beads and touch them and play with them. It might be a while but I will be sure to do them justice as best I can and give them happy homes in pretty pieces. Thanks again Ms. Sparling :)
Tuesday, June 15, 2010
Only a quick health update here so prepare for something that does not excite- have been informed that a couple of you were wondering what had happened to me so I pretty much just want to reassure that I am still around! Though again, I'm quite ill.
Portugal continued as it started - it was nice weather but I wasn't really well enough to fully enjoy the trip, mainly problems with breathing continuing. On the last night I was getting pain back in the top of my right lung again, where the trouble was a couple of weeks before, I was really worried about he flight back but it didnt worsen on the flight. I also got stomach pains that just didn't let up.
I got home late on the Sunday night, but was in A and E by 5.30am with these stomach pains as well as vomiting and of course the pain in my lung. After a couple of days in Jersey hospital I was taken by air ambulance to S/Hampton hospital again and ended up being diagnosed with DIOS but also a cavity-causing pneumonia, which is obviously what has been hanging around and making the past few weeks hell for me! And why I didnt feel better after the IVs. Then after a bronchoscopy scheduled for Friday afternoon, it was called off at the last minute (and I mean, seriously last-minute, I was practically being wheeled into the room!) because my blood clotting levels were completely out-of-whack and if they had knocked anything in there we could have been left with a very dangerous bleeding situation. I'm now having a lot of tests on liver function which they aren't too pleased with, as well as high doses of Vitamin K, along with trying to deal with the immense amount of pain that this pneumonia/cavity is causing to my chest, hoping to be well enough for a bronch on Friday. Oh, and I'm also on Fluclox, Mero and Tobramycin for !however long it takes" - let's hope it's not too long as they are messing me up!
I will be back when I can but for now thanks for thinking of me XX
Sunday, May 30, 2010
I'm tired of being tired. And tired of not being able to walk from one room to another without a rest to get my breath back, and tired of my whole body hurting the whole time, and tired of the effort I have to make to do the things that my friends don't even think about, let alone actually have fun or achieve things.
I can't breathe or move or think
I just want a 10 minute break
10 minutes to sit without having to concentrate on breathing, or 10 minutes to shower without it leaving me so tired I can't get dry or dressed.
...would be nice.
Friday, May 28, 2010
My brain is so smudgy at the moment, I don't know where I am or what I'm doing. Keep catching myself thinking thoughts which scare me. So hopefully this will be just the ticket to pull me outta my funk.
Can I just say that I am getting slightly concerned about my luck! I'm a bad penny.
And I have the most chaotic travel story to prove it to you :)
Please refer to the trusty bullet points, you may not know this about me but I am a compulsive list-maker. I feel lost and sick without a list, and the feeling of accomplishment when crossing off the simplest task is my heroin. I inherited this from mother hen, along with a host of other obsessive compulsive tendencies. We are the target for constant piss-taking in our house over this!
Well, in my packing haste I have ended up in a foreign country with only ONE notebook with me - one which has assigned content and so I can't multi-list-task - this techno-listing will have to sustain me.
But back to yesterday: (after a small panic over nto actually being able to work out how to DO bullet points on here!)
- Slept for 2 hours before rude awakening for packing.
- Hours spent sorting insurance, and packing in a panic
- Two bad hypos from not having time to eat anything at all
- Mothers other half throws away my travel snacks, thinking that we wouldn't want out-of-date food in the fridge when we got home
- Taxi arrives, it's the wrong kind and fitting the family plus luggage in takes 15 minutes
- Very uncomfortable journey to airport featuring both suitcases and heads pressed against car windows
- Having arrived an hour and a half before boarding time, security problems with my oxygen cylinder mean we have to run to the gate
- On arrival at Gatwick we are informed that our flight is delayed
- After much boring waiting, our gate is revealed as being a 20-minute walk away. By this point I am so tired I can hardly stand, cue embarrasing wheelchair-assisted trek
(I will add a positive here, my brother very much enjoyed scaring me shitless LETTING GO of said wheelchair on slopes)
- After boarding, passengers are told that we are further delayed by at least an hour, and no food, drink or toilet facilities before we air airborne
- And 50% of passengers are in fact, screaming babies.
- Longest, most claustrophobic flight imaginable concludes with discovery that car rental desk is closed because of the late hour
- On sorting the first car rental problem, discover that they have cocked up and given our car away and don't have one big enough for us
- Taxi drops us at wrong end of resort, though we don't realise until after 45 mins of searching for Apt. A-F, finding A-F, not being able to find the locked key box, a late-night phone call to the step-grandparents, and being told that there are in fact TWO A-Fs.
- Arrival at the right A-F finds us unable to open locked key box because the code is wrong
But our story has a happy ending. After another call, we tumble into said apt. A-F after midnight, all complaining of hunger. On turning on the lights, it is revealed that a kindly friend has been round, left half a supermarket of food including chocolate and wine, and even made up the sofa bed.
Oh, and I bought Glee on DVD at the airport so we had a sleepy viewing sesh before bed at 3am :)
Today has been sunny, but windy! Though I am still verrrry tired, everyone has been doing their own thing and apart from the layer of salt that now covers me, (from lovely CF sweat) I have no complaints about my afternoon of lazing and iPod-perusal. Surprised? ;)
I'll stop my babble now, for today.
Two last things though: for anyone interested, lovely Gemma has written a post about what it feels like to have IVs, which I thought might clear up any queries about why something that is supposed to make me feel better always means me complaining about feeling crap! Take a look here...
And a quick shout-out to Tori, who is still doing amazingly after her Tx, and continues to dazzle me with her strength.
Thursday, May 27, 2010
Breathe Easy Greg,
Sadly yes, I am excited by this. Especially since Laura Sparling was my number 20 and looking at her beads and blog makes me drool :)
But. I need some advice, please, my head is all twirly.
Situation: I'm not well. I've broken out of the hospital wayy too early because I'm meant to be off to Portugal for ten days starting today (Thursday) lunchtime. I realised this afternoon that I don't have any frickin travel insurance any more. Spent 5 hours on phone and internet and found only two companies who will cover me now that I'm so much more ill than 3 years ago when I last needed it, for £520 or £770 for the 10-day trip, even using a list of specialist companies that I got from the hospital and from the CF boards. The holiday is already shaping up to be very stressful for me for certain reasons, this is adding even more to it! My mum says she wont take me if I dont buy the travel insurance, saying that she will be hugely disappointed in me if I choose not to go, because I have the money saved: Cue, slagging off to the whole family if I dont go. Thing is it's a huge chunk of my savings, which I actually have plans for, yes maybe my mum doesnt think I'll ever do the things I want to but I have to have something to hope for!!
I really don't konow whether just to pay for it and go along, or to refuse and let everyone down. Saying that it seems obvious that I should just do it. But I know my dad won't be happy at all, and I won't exactly feel thrilled...
Argh there's just so much stuff I can't even explain. I'm stuck.
Wednesday, May 26, 2010
First of all the genius with glass that is Laura Sparling has cleared out her jar of top-quality lonelies and is offering up these beauties:
So to be in with a chance of winning get yourself over to her bloggy world at Beads by Laura, read the post and follow the rules! Ends 7pm Friday 4th June, UK time.
And also sharing the love is Anne at Gardanne Glass Beads...To celebrate her 300th sale (wahoo!) she is giving away a beautiful glass focal bead, as well as some others in glass and enamel, like these babies:
She'll be picking her winner at 9am this Friday (May 28th), though I think she is across the pond she hasn't mentioned a limit on where entrants can be from so fingers crossed.
Good Luck :)
More on that later though, for now, I'm seriously worried... I've been watching Glee on the laptop. And I think I have a Gleek inside me wanting to break out and sing along.
Err, Yes Please??
Thursday, May 20, 2010
But I'm breaking out of here! Wahoo :)
After an anxious day spent trying not to get my hopes up too much, the doctors finally came round and literally just said "Okay, so we're happy for you to go." All the waiting all day for THAT?! And I'd missed my usual flight by then. But now, after a very hectic hour spent panic-packing, I have just time to blog a little and munch my apple before I leave for the next flight. It's with a different airline to my usual and apparently the planes bear a resemblance in size to toy aeroplanes, so this should be interesting...
I am a very nervous flier.
Anyways, slightly changing subject to distract myself from the shaking and sweaty palms I can feel approaching, I am so grateful that my dad squeezed a lot of my stuff into his bag to take back after he spent the weekend here... My case is bursting at the seams, and my big handbag weighs about as much as a small person. Oops! How could I have actually accumulated more stuff whilst being here? I sent the clothes I bought back with dad... And I would expect to have less than when I came over seeing as I brought bottles of Ribena and crisps and chocolate with me! Hmmm... I s'pose I do have a bunch of medications they've given me. Oh! I have a new neb! I finally got an eFlow wahooo :D Now yes, I know that it's tiny but when you first get it there is lots of extra bits and bobs. That must be it.
Ok, well, off to see if my toy plane can make it across the channel now :|
Wish me luck. xx
I can't wait to get home and do some crafty stuffs, I feel deprived of journalling and designing and making jewellery, I really do. I can hear my silver calling to me...
Wednesday, May 19, 2010
Also just a thought for the donor and their family, and a thankyou to them for saving our friend's life.
A new follower of my blog, Mizz Ali, recently did a post of her own including awards, and awarded me TWO of them! Which is so lovely. Now I have never really come across these awards before but I will pass them on anyway and it is up to you if you want to pass them along after that.
First of the, the You're a Star award: apparently you have to say seven things about yourself. So...
1) I daydream about travelling every single day.
2) My mouth waters whenever I think of these huge prawns that you could get from M&S at Christmas, Even though they cost like £12 a packet i wish i could treat myself to one every now and then!
3) When my room is messy and unorganised I feel sick and so stressed that I can't sleep.
4) I LOVE LOVE LOVE sending letters, I have lots of penpals as well as writing to my real-life friends sometimes! I also LOOOVE giving gifts, and seeing people's faces when you've chosen the right one.
5) I think pugs are so ugly that they're cute.
6) I still sleep cuddling a teddy bear, I got it about 10 years ago.
7) A very bad habit of mine is starting new projects and not finishing them!!
Ok, well I award this blog to: . . . hmm, let me think.
Well I don't know, so I award it to all of you! So then I won't feel like I'm asking someone to do it lol. Plus, you're all stars, obviously! :D
The other award won't upload unfortunately, and it was really pretty too!
Other cuteness: In paperchase the other day, I bought stickers, postcards and a letter set in their new design, Day Trippers. Its so blimmin lovely:
In other news, I'm probably flying home tomorrow. So happy to be getting out of here, have to admit though, very disappointed in how little I seem to have improved, but the doctors are basically saying now that they don't know what else to do for me. I think they are trying to say that I just need to accept that I am getting worse, and I am going to stay that little bit lower each time I have a blip. Just need to work at it and try not to dwell on it I suppose. And get a move on with living a real life!!
Lots of love to you all out there.
Saturday, May 15, 2010
Friday, May 14, 2010
SO I came into hospital on Wednesday 5th, and was put straight onto Meropenem 3 times a day and Tobramycin twice a day. This was followed by the usual general exhaustion and nausea that I expect from IVs, but on Friday they added in Co-trimoxazole 4 times a day and things really went downhill... Crazy sickness and eating or even drinking water became an impossibility, by Saturday evening I decided to refuse the Co-trimoxazole and went back to just Mero and Tobra.
On seeing the docs on Monday they decided to switch the Tobramycin for Colistin IV since there was no real improvements happening, assuming I would be fine with it because I can tolerate it nebulised... wrong again! Tuesday I woke up so low on energy I couldnt talk or move, was flat on my back all day and it didn't help that that was the day my dad went back to Jersey aswell, so I was left all alone in that state! Everything felt heavy and broken, was finding it hard to breathe like someone was sitting on my chest and squishing my ribs, so Tuesday afternoon was taken off the Colo and left with just Meropenem... fine by me as I'd become used to the effects by then, though a worry that they originally wanted me on 3 antibiotics to have the best chance of fighting my Cepacia, and I was left with only one.
And well now, here we are, Friday afternoon. I think I have just about got back to the level of how I felt on my first day here! haha. Talked to the doctor this morning and he said rather than start me on the only other drug they can think of, Amikacin, (Tazocin, Gentamicin and Ceftaz are out due to allergies) and me have to stay another whole 14 days, they will just leave me on the Mero alone for 3 more days. To me it sounds overly-optimistic to think I could be well enough to go home in 3 days but we'll see, fingers crossed! I'm telling you now though, there's no way I'll be going without a fight if they try to send me home and I'm not feeling any better, no way I'm going to have lasted this out for nothing!
I'm sick, in agony, bored, lonely, tired, dirty, frustrated and hungry, but hopefully it will be for a reason.
And now the whinge is over. I will be making a real effort over the next few days to be POSITIVE!! Which if you know me is a bloody hard task. I am probably the most negative, pessimistic person you could find. Depression loves me.
But: I have been talking with my lovely friend Jordanna, and we are hoping to put some plans into action over the summer to do some fundraising - it is something we both want to do, will make us feel good and get another thing crossed off my list :)
I have also spoken to my friend Ollie who is super special to me and we hope to go on a hot air balloon ride over the summer, another list thing; and also hoping to go on a couple of travels with people - health (and money!) permitting of course.
I really want to actually get these plans into action and DO some things rather than just dream and talk though. Back in January when I was really poorly and the doctors were telling me I had maybe only two years left in this world unless I got a transplant, my dad and I made lots of grand plans and had big ideas, but none of them ever really got off the ground. Now its 4/5 months later and some of the things on my list are crossed off but I really want to create some experiences and memories with other people as well as the things so far which have been mostly more perosnal "achievements", if you could even call them that, like getting my piercing and tattoo etc.
I want the second half of 2010 to be different. I don't want to be looking back at the end of the year, as I did in December 2009, and be so thoroughly disappointed in myself and feel that I've wasted some of my precious time, what could theoretically be half of my time left altogether. You just never know what's going to happen. In the last six months-year we have lost so many CFers and I'm realising now that most of them weren't expecting to go... it just took one quick unexpected infection, one course of drugs that didnt help like they usually did, or a call that never came and then BAM, things were over.
It's not cancer, we aren't going to get told, "OK, you have 3 months to live, go out and enjoy it well". We need to live every day as if it is our last because it really could be, this is true of anyone ofcourse but even more so with CF... I just need to keep that in mind as much as possible, and hope you guys will too! We have been dealt a shitty hand but it could definitely be worse, and our lives are too short and prcious to be spending time miserable or doing pointless things that make us unhappy.
Ok, well that got maybe slightly depressing but I meant it to be positive, I promise!
On a happier note, I think my dad is coming over tonight, I will have company and we will hopefully go out for some nice food. I need to get clean though!
Also I am so so grateful to those of my friends who have sent me things in the post which arrived today - Jordanna sent a book, Alice in Wonderland so that I can read it as it's on my list, Tiff sent me a lovely letter with some photos and a little "Happiness Kit" which I will post more about later! And Annie sent a cute card with some little teeny toy animals (she works in a toy shop hehe). Along with the card Megs sent me earlier in the week, these simple things have brought some sunshine to my stay, it's nice to know that when you're feeling so low and forgotten that people really are thinking of you and will make the effort to let you know.
Ok, I think I've probably bored the socks off you now so well done if you are not snoring with your head on the keyboard! Bath time for me now. So much love to you all and I hope you are well and happy xx
Thursday, May 13, 2010
I've felt worse with the drugs for longer than usual
I detest this place
The sterile smells and lonely room.
I feel like maybe all this isn't worth it. I want to stop.
I wonder what it would be like to just let nature take its course, leave all the chemicals and treatments and exhaustion of having to try so damn hard every day.
I wonder how long I would last?
and then I feel guilty.
SO so guilty.
So many of us are fighting to survive, wishing and praying on new lungs and a new life, and here I am wanting to give up and give in.
I dont think I really deserve much of this help, the money spent on my treatments, medicines, nurses, doctors, room and food.
Im just wasting the oxygen around me. Breathing it in, and using it up when others of you deserve it so much more, WANT it so much more... Im so sorry :S
Saturday, May 8, 2010
it keeps killers inside this room
inside this porridge hued prison cell.
Loud doors swinging SHUT:
welcoming me back into the fold
a little worse today
a little worse this time.
Loudness in bleeps and bells
incessant shrill piercing bells
Another drug forced into my veins
intended to poison the enemy in my lungs
destroying some part of me each time too.
a part forever undiscovered
stripped of life before its time
i know somewhere in this hospital
someone is screaming
someone is crying
a person is dying
their last breath just a whisper
the Loud of the place.
I am afraid.
Next could be me.
Or another of us, my own,
this breathless army
We dont know when the next bomb will drop.
Maybe we could fight
Maybe we would make it to shelter
Im just a weak body, weak lungs,
ever so slightly.
Ok, so im not a writer. but I think the drugs are addling my brain XD
I like the lines in bold.
I'm sick again.
No more... I hate that complaint is all my blog is :S
I am so weak.
Friday, April 30, 2010
I now have my first tattoo. Might be kinda cliche, but it's what I wanted, and kinda needed, so there we go.
Pain - a LOT worse than I expected, though worth it. I was counting on the theory that it feels like "scratching a sunburn", well it was more like he was slowly cutting my foot in half with a razor blade :O
And well to be honest there are some things I'm not so happy about with it, it's slightly wonky in one place and now that I look at it, it seems obvious that when i asked him to put the words in a different order, swapping hope and courage, he just moved the words about but didnt actually change the design so it doesnt flow as well as it should, REALLY nto happy about that! Hopefully it's not too obvious though. And as I said, I'm putting it up to life experience. I'm happy I got it (and very grateful to Jordanna for being my hand to squeeze!)...
Photo time :D
My personal favourite photo face!
End result, tattoo by James at Skin Scene, Jersey. 1hour:
Everyone, including me, seems to be getting unwell at the moment, thinking of you all!
Thursday, April 29, 2010
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
Monday, April 26, 2010
Well first of all the woman was late, but only by 5 minutes. But when I got in her car it felt like it was going to be great to drive! It's a Fiat 500, pretty much brand-new...perfect for me in that the pedals and steering were BEAUtifully smooth and light, and the gear-stick is raised almost to where the radio controls are on most cars, rather than down by the handbrake, which I found really made things easier... I had been having trouble changing gear before I think just because of my small size and that I'm not "strong" or fit in the first place, and the position my arm had to be into change gears made the muscle feel very weak! So it was nice to have that change in the Fiat 500.
Unfortunately from there my pixie proportions of 4 foot 11 inches tall meant that with the highest dashboard I've ever encountered, I couldnt really see the road! If i strained to strech I could just about see where I was going, but I was secretly using the side mirrors to drive for most of the lesson (shh!) - like checking my position on the road and stuff. The dash was pretty high anyway but along with a high steering wheel and a "hump" right in front of my face in the dash which housed all the speedos etc it became a problem.
Got to remember to take a cushion to sit on next time - or a booster seat! Haha :)
I do think I will try one more lesson with this lady, but she was kind of annoying! At the start of the lesson she insisted on explaining the complete basics to me, even though I explained I have been driving for a year and a half, but I can kind of understand that, I could have been lying I suppose! But once we FINALLY got going she spent probably 95% of the lesson - no exaggeration here - with her hand on the wheel, not guiding it or anything just with it sitting there? And don't forget this is after she has drummed into me that my hands must never leave the "ten and two o clock positions"... Did she expect me to leave my hand under hers, or rest mine on top?! So it was basically a one-handed hour of driving. This driving was also never fast than 20miles an hour as whenever the speedometer crept over the 20 mark she would say all calmly-but-scarily: "and eeeaaase off a little, eeaase off, thats it, eaase off"...it got really infuriating! I know it was my first lesson with her and the island limit is 35mph, but jeeze! I'm sure I'm not that bad a driver and it would have been obvious that I was experienced. As I explained to her, the only reason I need the lessons is to go over reversing and parking as I have never covered that.
Oh! And I only just remembered this but there was a very dodgy incident with a narrow lane, two cyclists (clearly worse for wear after a boozy Sunday lunch) and a family of walkers, plus two cars coming from the opposite direction... She made me try to get through when CLEARLY it was dangerous and never going to happen! I ended up stuck with a kid on one side, car on the other, family of kid behind and cyclist in front, all looking at me very angrily!!
Deary me. But for some reson I have arranged to meet her next Sunday for another lesson?! WTF? She was really sweet though and I didnt want to offend her. And the car was so easy to drive, discounting the height issue!
Should I keep next Sunday's appointment? Or maybe I should ring and use the height problem as an excuse to cancel, try to find someone else? On looking at it when written down it seems like a no-brainer, lol.
Saturday, April 24, 2010
I know there has been a lot of talk about using it for laughs around my friends and facebook etc, mainly to do with creepy guys exposing themselves!
But I just read an article in Grazia about it. I was thinking if I did any kind of art it would make a really interesting piece/project... like 60 minutes, 60 users, 60 screenshots, something like that?
But in the Grazia article something really shocked me... It said that there are people who troll on there and have replaced their webcam view with "fake snuff films", ie. someone swinging from a noose or bleeding to death on the floor. And that makes me so happy that I seem to be the only person I know never to have gone on it...because seeing that would
Seriously, when I read that I nearly threw up and I'm kind of shaking. Eughh. Why?!
Has anyone come across something every sinister like that?
XX Goodnight world!
Friday, April 23, 2010
But I've been very busy this week! Unfortunately not very social, still a hermit!
But Ive been to the dentist - and dear me was it horrific! I was meant to be getting the toothypegs whitened! As they are something I am really concious of like my bloated belly. But I ended up have instead: FIFTEEN (15!!) injections in my poor gummies!! 4 fillings and 5 enamel replacements! Damn you fruit addiction, you wreak havoc on my enamel :(
But at least that's all sorted now.
After the dentist - and a good hour of walking around town, covering my mouth if i had to speak to anyone since i noticed i looked like i had super-gravity on my face - it was time for the hairdressers and I went to a different place than normal as they had an offer of free colour with any cut and blowdry, obviously with a junior but it still went pretty well! I have gone a few shades darker, not quite to the black i used to have but a dark brown... The only thing was the girl was really messy and my hairline and ears are very stained! :( And also, I'm pretty sure once it fades (i only got a semi-permanent tint this time) its going to be red-ish which i asked the, to make sure it wouldnt, but it does seem to have red tones in.
Oh, and about 5 minutes into the appointment the girl asked me how old i was, and literally spent the entire time after that exclaiming "Thats crazy! you look about 13, 14 at most! I dont believe you! You are NOT 18! you know i would still colour your hair if you were under 18, you dont have to lie!" etcetc... I was imagining giving her a good smack! I dont mind a quick word of surprise but this was literally a constant hour and a half of saying i looked like I was in year 8 or 9, I got so pissed off. And the thing was she was only 19 herself, surely she would have realised that I probably wouldnt be comfortable with it? In the end i said a few times "ohh, yeah, i hate it, people always go on about it..." quite pointedly, but she still didnt get the hint. Grr!
So here is the new look... Plus my i <3 zombies tshirt :D love it
And... next change...
Ouch! I *hope* this kinda suits me. But it's what i wanted, well actually I wanted my lip done and have since I was 13 (stupidly did it myself at 15 only to have mother force it out a day later), but my teeth are such a mess already i dont want to risk them being damaged at all more! So my little (well, quite big lol) blue sparkly is now settling into my nose. It freakin hurt for an hour afterwards but now i cant feel a thing!! :D though the hook inside is HEE-UGE and so noticeable from the slightest angle! But 6-8 weeks and i can get something a little more discreet :)
Oh, and a picture or two from the last week or two. Enjoy XX
^ My new owl doorstop :D i love owls! Isn't he cute? He needs a name though. Suggestions on a postcard please...
a genuine Jersey cow <3
Saturday, April 17, 2010
Urban Decay Alice in Wonderland Book of Shadows;
Nowhere on the island does it, its sold out online, and i CRAVE it.
If you want you can get it for me and send it ok :)
Thursday, April 15, 2010
At the mo I'm thinking just keep it simple with some version of "Lauren Alexandra Design" or "Lauren Alex Jewellery"... thoughts? My reasoning is that this would be more flexible than a name which would completely confine me to one style of jewellery, though i dont really know how to explain what i mean?!
Also any random contributions to my melting pot would be appreciated, ta :)
My general style would probably involve silver, copper, and glass... less of the kitsch plastic type jewellery that i love for myself, just mainly because i'd rather be as creative as possible as opposed to minimal stringing of charms onto chain or glueing components together...
(Oh and my middle name is Alexandra, it's not out-of-the-blue!)
Tuesday, April 13, 2010
I am really fighting a losing battle here!
The past week or so I have been having the most realistic and lucid dreams - i can tell i'm dreaming, though i cant wake myself up...
A lot of the time when i do wake up I'm bricking it 'cos they can be really scary though!
But the problem is that they are so real it feels like I'm not getting any sleep at all, I'm so tired but I'm scared to go to sleep because I dont want to dream!
I've tried all the usual advice, sleep routines, warm baths, relaxations etc, but does anyone have any suggestion as to how I can sort myself out? I kinda just want another pill to knock me out and make dreams disappear... Oh morphine, how I wish we could be together once more! ;) haha. I know you need the dream sleep to recharge, but it just seems that all my sleep is is one huge long very real and exhausting dream :S
I can tell I'm going downhill quickly the past day or two, I DO NOT want to be back in the freakin hospital again, across an ocean from home with no company etc, but the tiredness and stress and stuff isn't going to help with keeping my head above water so to speak.
I'm pretty sure my sats are low?? : my headache is constant and gets worse pretty much whenever i move, i have absolutely no energy, im heavy and breathless and feel drunk half the time - like my words are coming out slurred and stuff cos i dont even have the energy to talk properly, same sortof thing with moving! Would that be about right for having low sats or anyone have any other ideas?
And along with everything, last night after a day of feeling horrendous, I fell asleep at midnight-ish (early for me) only to wake up at 1am and not get back to sleep ALL NIGHT... I couldnt get comfortable at all, was freezing cold even with my jumper and socks on and heater on still, mind was running wild, body couldnt stay still, in particular because of the pain in my legs they wouldnt stay lying flat, at one point I was just kicking around for an hour in tears! Grrr.
Plus I was REALLY thirsty all night which is a worry on the diabetes side...
OK. rant over, i think. Sorry for another boring and depressing health post!
Im just worried and hoping that a) this will calm my mind a bit, and b) i might get a word of advice or reassurance that something isnt very wrong! haha
Sunday, April 11, 2010
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
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.
Hope everyone else is getting on okay.
Thursday, April 8, 2010
Thursday, April 1, 2010
ohhh haha this is not cool. oh well i had fun :)
To be honest by the time i got to the party I wasnt expecting to have fun at all, and it ended up being in her garage and it was freezing! Although looked pretty cool cos her dad had put up loads of UV lights and projectors with cool stuff :O
I was wearing my army boots at this point may I add.
Basically me and two other girls were sitting on the side of things and not really fitting in, plus we were tired, so we ended up leaving around half 9, and Daisy drove is in Vanessa, her awesome new but old van :)
They were just going to drop me home but somehow I ended up finding out that my best friends were all heading into town at that point to I got dropped at Wildfire...first time Ive been into town, used my ID etc! exciting stuff.
When i was putting on more make-up in the loos the girlsw realised i had my heels in my bag and made me put them on! Which i am quite happy about cos I was still short. Had a couple of cider and blacks bought for me, then moved onto Champions whicdh closed really early and then Chambers where I got bought more drinks which is always fun :)
Because people hadnt seen me for so long they were all like :O IM BUYING FOR YOU! haha
Was planning on getting a taxi home with India at closing around 2 but starting lagging around half 12 and dad ended up coming to get me.
And it was actually really nice!
But fuck me im already paying for it now, for some reason my chest is really tight and im breathless like mad though of course it wasnt smoky. Towards the end i was coughing quite a scum cough which of course attracted lots of attention :/
But yeah. enjoyment.
meds and bed now, i usually sleep from 3am-1pm anyway so who knows when i'll manage to get myself outta bed tomorrow!be some pictures.
i'll try :)
Just chilling with Two and a Half Men and Fizzy Fish sweeties :)
Wednesday, March 31, 2010
I'm excited :):)
don't know if I'll be drinking and don't know how long I'll last but it's a start :)
My dress for tonight...
and with my PARTY shoes ;) ha i love these beasts, they make me a least a little taller than my usual 4 foot 11, though it doesnt really help when all the other girls are wearing heels too! But they are SO comfy, I think its the platform, the only pair of heels I can dance all night in.
I love the material it has little cutouts and flowery bits :)
Will update later on how the night goes!