Tuesday, June 29, 2010


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.

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.

Sunday, June 27, 2010

Calmer...to a degree.

Thank you so much to those of you who commented on my last post. Sometimes it's just knowing that people are out there that can stop you from giving up and giving in completely, and you were all lovely. Thank you.

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.
101 dalmations

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


Just to warn you, this wasn't written with me in a very good mindset at all. It's not exactly a skip-through-the-flowers type read.

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

Steroids taste FOUL.

I just tried to take my tablets and had real difficulty due to the fact that I have been coughing ALLL night, and I mean a cough for every 5 seconds, and my throat has become swollen and raw. Ended up gagging on the prednislone: it's not coated, and tastes HORRENDOUS. Any suggestions for removing the taste from my mouth? I'm sitting here squirming!

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.

disney princess and frog
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

Winning Streak?!

Well, first of all, this blog is a day late as internet was temperamental yesterday! I just wanted to mention my dad first. We have definitely had our ups and downs in life, but as i grow older he has become a unique figure in my life who supports and encourages me in everything that matters, and knows exactly how to be with me. I love that we can sit and do our own things buit still be together. I love you dad.
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

moustachio-ed kitty!
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


This morning I received a teeny tissue paper packet with a bow around it from my fantastic friend Tiffany. Inside was a silver chain holding a little silver owl pendant - he has made my day. Very cute indeed, he even has a little twig perch - photos when I'm home.
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

Another Check off the List :)

So whilst I have been shrivelling and sickening, the cosmos (and one lovely Laura Sparling) have been hard at work getting another List item crossed off with minimal effort from me. Happy news! Remember I posted about Laura's Lonelies Giveaway?? Well, get this - I WON.
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

Copper Diem Giveaway :)

Wahoo for lots of giveaways recently!
Copper Diem's is a pound of beadie goodness - here.
copper diem giveaway

prettyy :)

I'm Alive

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