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.

Packed up, Shipped Out

So I'm now in sunny Portugal, very tired, slightly stressing about my chest, half a grand worse off, but keeping my fingers crossed for a week or so of being able to relax.
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.

XX