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- Mothers other half throws away my travel snacks, thinking that we wouldn't want out-of-date food in the fridge when we got home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.