What a girl goes through for a holiday!

Random excitement burst..... BACKSTREET BOYS ARE COMING TO THE UK IN 2014!! Woop!

Now, back to the reason for the post!

For most people, when a holiday is approaching, the biggest issues are deciding what clothes/shoes to take, book/entertainment and how much money to take with you.... for me, add numerous other complications into that.

First off- insurance. It took me about 3 weeks to get a full and accurate insurance quote to cover me for everything medical. This process involved me crashing about 4 different company quote engines, talking to sales reps numerous times, then eventually them holding their hands up and saying 'we haven't a clue what to do with this, we'll get our specialist underwriter to call you direct'. Another 2 long conversations with her later and I finally get my quote. This amount would easily pay for another adult to come along on our 2 week all inc Caribbean holiday. Money warning bells in my head started chirping, but Glen being the voice of reason said he would rather pay this and know that whatever happens to me on holiday, it's covered.

Insurance check, next up... oxygen. Flight oxygen is easily sorted... an email to Virgin to reserve it, then get the docs to fill out their medical form so they can have everything tied up prior to departure and job done. Problem being I'm on oxygen 24/7, I need something for the time I'm not on the plane.... my research started with the British Lung Foundation for their advice (as CF Trust very kindly ignored my email!) After getting a list of some companies that may be able to provide oxygen in some form, and contacting them direct I established that due to travelling so far, I wouldn't be able to get what I have at home (numerous cylinders) so I would have to source a concentrator. I eventually found 2 companies which did portable machines (POCs) which could run off batteries and both ac and dc mains... so effectively can be used anywhere. I asked for a couple of quotes and eventually settled on the one to accompany me in my travels. I should be getting that next week a couple of days before I fly so that I can have a play and check that I can work it while I have people on hand to help me with it!

To get me tip top for the duration I'm away- so I'm as best prepared and hopefully to prevent any problems while I 'm away- I begrudgingly agreed to a 3 week IV course :( I fought for only 2 weeks, but no it had to be 3!! I am now on the last week of them (hazaa) but it hasn't been a smooth course this time around. My first week I was on 3 drugs, thrice daily. From start to finish each dose took approx. an hour (setting up, mixing administering and clean-up) this in itself led to an incredible amount of tiredness. With IVs, they have to have a minimum amount of time between each dose, and with having it 3 times a day, this results in having to get up early for the 1st dose, or the bedtime ones get too late. I generally do the 1st dose, then back to sleep for a while, but it is still broken sleep. For the first time in a long while, I did suffer with proper side effects of headaches after every dose that first week which was one reason (the other tiredness) I asked to have the number of drugs reduced to 2 for the second week. 2nd week, headaches stopped and dose time dropped to about 25 minutes, which felt like bliss (and lunch was only 1 drug so even quicker!) My only problem that week was that I seemed to pick up a 24hr stomach bug and couldn't eat (struggled to keep biscuits and water down)... even my anti sickness IV didn't touch it :( Luckily that passed and I got right back on the eating!! Yesterday my drugs were changed about, still on 2, but one of the ones I was on before has now run out nationally so they no more to give me! My combination now has seen me return to the one that was dropped form the week before, so I hope I don't get headaches back *fingers are crossed*

In clinic yesterday I saw the dietitian who had seen me on day 1 IVs and my weight had dropped a teeny amount (1kg) but this was mostly to the fact that I had decided to run an 'eu naturelle' test and see what my weight did without doing any PEG feeding between clinics. (3 weeks off feeds) I was surprised I had only dropped 1kg, but she was a little concerned about it only because of holiday approaching and I won't be feeding while away. So asked me to try to put that kilo back on before I go away. Saw her yesterday, and had she not of been wearing tights, I think it would have been safe to say that I knocked her socks off!! I put gained back that kilo lost, plus another 1kg so yesterday recorded my heaviest EVER! I now have a BMI of 21! I'm now excited to be going on holiday with an appetite to see if I can put on weight abroad, with no feed or dairy (I hate foreign milk!) helping that along is that I've been put on a week of steroid tablets to try to help my chest inflammation. Last time I had these tablets I ate like a frigging horse, and my appetite is already more than it was then.

I've been preparing bit by bit my holiday drug stock take. When you have 6 pages of repeat prescription from the GP as well as about 4 things you get direct from hospital, getting together enough tablets, inhalers, anti-biotics, pain relief and plenty of 'just in case' items takes a lot of thought! Over the past 2 weeks I've done multiple stock takes to see what I have of everything I take, and when the current amount will run out, therefore how much do I need to order in before I go, and what will I need to order before I'm home to have ready for me to come home to.... I'm getting there, last GP run is going in tomorrow (I hope!) so hopefully by Monday I should be able to pack my holiday drug holdall!

Lastly, the normal holiday packing panics... 'will I have enough xyz?', 'how many bikinis should I take?' (Will I feel comfortable showing my stomach with the PEG, should I take swimsuits?!) More importantly for me, I need to decide what books I'm taking, and when to start my holiday reads. When I'm on holiday, and don't feel guilty about doing nothing but reading, I get through books like they're going out of fashion. Glen isn't a big reader, and won't take books that I'm bothered about reading so I need to make sure I take enough to keep me going for 2 weeks, but not too many so it is too heavy in the suitcase! I know here, techie folk are screaming 'Get an e-reader'... I have a kindle, but I save my big chunky (serial) books specifically for holiday so I can get my teeth into them. Ho hum, busy weekend packing clothes and choosing books!

Lastly, having been watching lots of Australian Masterchef and looking through recipe books and food-y programmes etc, I have an interest in making yummy things. So weekend before last we decided to attempt Black Forest Roulade (v.1) we got all the ingredients sorted and started... the choc melted fine, the eggs didn't seem to want to whisk into peaks... even after Glen giving it such a good go for a long time... me being the 'bosher' I just decided to go with it and see what happened... the bit that struck me as we have severely gone wrong was the point in the recipe when it said to 'spoon the mix into the tray'... mine just poured and almost overflowed the edges of the tray. As it was cooking it looked kinda like an alien creature, when it came out I then could not separate the baking paper from it. We had somehow managed to create a gooey, crispy, chewy chocolatey (papery) mess. It cooled and went in the bin. The house smelt good though! This week between us we found alternative techniques to try to iron out those... kinks! This weekend... Black forest roulade v.2... and look for yourselves below! Not perfect, but a darn sight better and at least it looks ok (from one side, the open side looks a bit like roadkill!!)

  

Week of changes and trying new things

So this week has been a bit of a mixed up thing in terms of things I do for my health... probably shouldn't have tried changing things all in one go, but ni! That's what I tend to do!

Firstly Monday I did a drug challenge to change my DNAse nebuliser to a different drug through an inhaler. Quicker, easier to manage/transport/clean etc... the challenge involved taking pre dose blows (no change from week before, phew!) then taking the dose in small chunks with oxygen level checks and blows to check that I didn't have any adverse reaction to the drug preventing me from continuing. That all went well... my oxygen sats actually went up by 1% at the end (doesn't seem a lot, but the higher the better!) and my fev1 (how much air I can force out my lungs in 1 second) had improved a teeny tiny amount. The overall reason for this drug is to help shift the gunk out my chest, and it certainly started doing that immediately! So... Now being Friday, I've been doing it for 3 further days at home, and it is helping to shift the nasty gunk out, so I'm hoping it continues long term and isn't just a random shifting spell! My other concern is that I did actually take part in the clinical trials for this about 8 years ago, and ended up having to pull out the study because of repetitive headaches... as I'm more prone to them now anyway, I'm really worried that it's something that will benefit my chest, but could cause daily headaches... nothing is ever straight forward with a CF body!!

Next new thing was on Tuesday I gave reflexology a try. I had a very nice lady come into my home for a session of reflexology on my feet (not sure if this can be done on other body parts but she was specific about working with just feet!) She explained how different parts of feet correspond to different body parts, even down to things like intestines and 'lady parts' ;) She warned that I might feel a bit odd the rest of that day (which hit me about 6pm and Glen thought I was completely out of it and not acting right at all!) but I should just judge and see how my body responds to it over time. I'm not sure what I was expecting, or how I should feel if it has benefited me, but I think I might give it another try next month, see how it goes. If it can help my achy back and relaxing issues then it's worth trying for a couple of sessions!

Lastly, I had my flu jab on Wednesday... very important if you have (or have a lot of contact with someone with) CF. Any extra bugs and germs could cause big problems through the winter, so every October I always make sure I have mine. As I work in a hospital they obviously offer them to staff... benefit of having it done at work rather than home GP- they give out lollies, time away from desk working AND I didn't have to stand in a really long queue with other poorly based people at the surgery! Score. I have now got the obligatory achy arm (gradually improving) but hopefully it should be enough to keep me from anything too nasty this year... now the challenge is to get Glen to have his!

I've rounded off this week with a shopping trip with mum, and below is a rather fetching pic of me playing with stuff in Primark!!

My brain is frazzled!

So it's been quite a week for me.

Had my transplant assessment. 3 day trip to Pappy. On one respect it was quite nice going in knowing it was only going to be for 2 nights, and also as I wasn't under my normal CF team, I was left very much to my own devices. The nurses who I normally have to fight tooth and nail to let me do my meds let me be, I had no annoying late night or early morning iv disturbances and my time in the room wasn't being interrupted by people stopping by to 'have a chat'. On the flip side, there was a LOT of scary and in depth information given which has taken a while to sink in.

My stay started with a day of tests. I met the tx nurse coordinator Tracey who gave me a timetable of what should be done and when, as well as a tick list (I love lists, she must have known!) so I could keep track of what needed to be done before I left on Wednesday. Then followed what seems like my entire body's worth of blood taken by Rosie... my body was obviously liking her as she got blood from both hands (my left pretty much acts like there isn't blood flowing in it normally!) I also had an echo and an ECG, then extended lung function tests with Andrew including going in the 'tardis' and playing bowling with my breathing! Then I had a 6 minute walk test and I was done for the day. Essentially my lung function hasn't changed in the past few months (good as no decline, but any improvement is always preferred!) The walking test I did ok at, but my sats dropped even on extra oxygen so that shows that although I am physically capable of doing things, it is putting my chest under a lot of stress. Easy remedy, use more oxygen!! After this, my day was done, mum headed home and I was left to find something to watch on tv and mull away the few hours before sleep. Luckily my room had good www connection so I could play about and watch videos etc.

I slept reasonably well considering I was in hospital... it makes such a difference not being on IVs (or under my normal team) and I followed up a reasonable sleep with nothing happening on Tuesday morning, so I read a magazine, did some sewing,... generally killed time until lunch (and mum) arrived. After lunch I was taken over to the tx centre for my afternoon of serious talks. We spent a very in depth 2 hour chat with the nurse who went through a lot of info about the surgery itself and a LOT about the post tx life etc. This 'chat' frazzled my brain, and I did get to a point a couple of times where I wanted to run out (stagger!) and get air, but I stayed put till the end. After I told my mum this and she agreed that she felt the same in places. I had to try to relay this info to Glen that evening but it was hard, and I'm sure I didn't tell him half the stuff that was talked about. I guess even if you've been told this stuff before, you're never going to be ready to face stuff until it happens.

Wednesday mum went on hollibobs so Glen came to rescue me. We spent the morning waiting in the tx centre to see the surgeon (who was the guy that did my peg so had a nice catch up with him) who went through more detailed info about the surgery and facts about survival rates etc. After this I had to hang around to get my port accessed and do a 1st dose IVs as it was decided to go home on a course to try to nip my 'pre bug' feeling in the bud before it took hold into full blown infection. Eventually we got away, and by the time we were home (and good dog fuss later) I was dialling the local Indian for some yummy foods.

Thursday/Friday I was home alone as Glen had gone to a games convention. This time alone I tried not to do too much thinking as I had no-one about to tell me to buck up if i got myself in a state. Needless to say, I was relieved when Glen came home Friday night.

The end result of the assessment seems to be that the individual members of the team would be happy to list me (dependant on the blood work coming back ok), but on the flip side, they're happy to leave this decision making until my next review in January. This means I have a couple of months to get my mind around everything, and can have my holiday without any major worries about delaying things beyond a point that the drs are happy with.

Judy actually awake and looking at the camera!

Research time!

So it's a horrid rainy day in Colchester and as the dog is curled up in her bed not moving, neither am I!! If it wasn't for the community nurse coming to change my button, then I probably wouldn't be out of bed either!!

Anyhoo, I've been doing a bit of research with regards to organising a charity event... combined with Glen's mum say she wanted to organise a live band evening I think we could be on to something to raise a nice amount for Papworth & the CF Trust. I'm not going to give too much away as we're still very much in the beginning phases of planning... mostly talking about what would be good to do etc, but I've started my main focus on the physical side of it being a triathlon.

My first thought earlier this summer was for me to do a basic sponsored swim... but as I've found I can do little more than 4 lengths a day without getting horrid headaches I've had to rethink a little. So the plan is to do a 'sprint distance' triathlon. This includes a swim, run/walk and cycle. I'm not sure if the swimming part I'll be able to do, but hope to improve my stamina to get those length totals up... I will also be doing the walking and cycling part in the gym so I don't have to physically carry my o2 the whole time (or battle the elements whilst doing it!) Glen however is planning to do the whole lot properly... well, the swimming would still be in our local pool, but then cycling from ours to his mums, (a couple of miles more than the sprint distance) and then running probably around Colchester.

I found out the distances needed to be completed and then figured out how many lengths in our pool it would be. Also been looking into the online charity sites to help collect funds to send directly. Took a little bit of searching to find one where I can have multiple charities from one event but I found it... All we need to do is decide on a date and then I can set up the page!

I suppose the next job is to get Glens bike sorted so he can start his training!! Oh and he apparently needs proper running shoes for it too! I guess it's shopping time!!

Busy week has now ended.... relax!

So, I had a busy few days last week and I took a much needed chillax weekend just gone to recover some energy!

The previous week I travelled to Cornwall to spend 4 days with my family down there. Long drive, but all went smoothly with no hold ups and Lots of Eddie Stobarts to count (23!). Due to the fact that I was driving, I couldn't catch all the names, but tried whenever possible... mum even came close to singing my Eddie song (yes I'm sad, but it kept me happy driving for 6 hours!) we even kept a count in multiple languages just to keep our travel worn brains ticking over!

We had a lovely few days visiting some different places and looking in nice shops. I randomly bought 3 different dragon related things for the house so I guess I know what theme I was subconsciously going for! Unfortunately one of the dragons had to be sent back due to a huge crack, hoping that they will exchange it as they said they would over the phone.... the reasonably priced ornament has now turned into quite a pricey one due to the postage to get it back down there :( Own silly fault for not checking it before we left!

Arrived back last Monday, in the house for no more than 2 hours then was out for Glen's birthday meal. Was a nice evening (complete with surprise cakey!) but I have to say I was relieved to get in bed as soon as I got home!

Couple of days at work, and doing little on my days off, then all set for an ELO tribute night to see out the week. Horrid cold, blustery and wet Friday evening mum and I head out to meet her friend. Return to the same pub we went to on Monday, have an ok quiche (no dessert as they were being good! I had to miss out on Black Forest Gateau) then headed to the venue to be met with blank staff faces and suddenly some one 'didn't you get a call?'... quite obviously we didn't get a call, or we wouldn't have braved the downpour to turn up for no reason! Duh. We got our ticket money back and spent a rocking hour in McDonald's having an ice-cream (they'd decided to blow the 'being good' mentality by then) So on my night out, I was home by half 9! Rock on!!

All of this busy-ness has helped to while away another 10 days of waiting to go in for my tx assessment, which is now less than a week away. Scary how quickly it's come around. This time next week I'll be on my way through the tests with day one done. I've bought a few things to keep me occupied in the evenings as I know how dull evenings can be with no visitors (I'll have people with me during the day for all the important talks so no doubt lots of alone time in the evenings!) If I'm honest, I think it is time to be thinking more in terms of being on the list, but it's still a lot to actually accept, whatever happens... I'm not physically going on the list until after my holiday, but if after all these tests they decide it is time, then I guess it will be from December I'll need to get me a site counter thing for on here... (and work out how to get it running!)

Anyhoo, dinner needs sorting, and nothing's getting done with me sat at the lappy! Today's pictures are the birthday boy with his cake!! (Action shots!)

 

Burying my head in the sand

Well I have a date for my 3 day tx assessment through... they did offer me one for just a couple of weeks time which I turned down (too soon + Glen's birthday) so it's now the tail end of September. I'm kind of sticking my head in the sand for the time being though... in a way pretending that nothing different is going on, so I don't have to think about what it means. If I do start thinking about it all, I get upset and scared!

Before then though, I have my flight test to see if the Docs will give me the OK to go abroad anytime soon, that's next week, and god help everyone I come into contact with if it doesn't go well.... I NEED a holiday after all the crap that this year has thrown at me! also, if I do go onto the tx list after this assessment, I can't just up sticks and go on holiday in case I miss my call... potentially I could never have a foreign holiday again, if I don't get my call before it's too late. (Nice and doom & gloom aye?!)

I am also going and having a short trip to stay with family in Cornwall. I haven't been down there for about 10 years, so really looking forward to that, will be nice to have a few days away, but would have preferred it if Glen could have got the time off to come down with me as he's never been... we might have a sudden increase in UK breaks once I'm listed so I'm sure I'll get him down there sometime soon!

Hopefully I have a few things planned over the next few weeks to keep my mind occupied (also just bought some craft books with the intentions of making deccies for Christmas etc) so that I don't think and get too down about the spiral my health has taken downwards :( Ho hum.... dinner time!

Random arty shot I took of a staircase in Glasgow- my brother and his girlfriend are at the top... thought it was good symbolism of my spiraling health!!

Post tx review

I've decided that with every post there will be a picture, it might be related to the post, it more than likely won't be! I just wanted to have something, so it's going to be pictures!!

I guess from reading other CFer's blogs, typically following them along their transplant journey (and beyond) it got me thinking about starting a blog of my own... not so much because I lead an exciting life, or even a remotely interesting one... but just for somewhere that I can kind of 'chat' things through with myself in a more sane way than just sat talking to myself in a corner (while hugging my legs and rocking probably!) I think deep down in my heart, I knew that by starting this blog when I have, it would probably end up becoming MY transplant (tx) journey, but didn't really want to admit it to anyone as it kind of feels like I'm giving up and resorting to the fact of it.

Anyhoo, I've had to do a lot of thinking over the past week, and I hate thinking! Last Friday saw my tx review appointment, 3 months had passed already! Last time around it was pre-peg and before all the silliness my body decided to go through... so they were perfectly happy just giving me an active monitoring status, nothing needed doing and come back over the summer... since then, despite having put on practically a stone in weight, now I'm on o2 all the time I knew which they would view as the more important factor. So Glen and I rock up, having had a partially serious talk about it on the journey, hoping they'd say have another 3 month review, but dreading they'd go with an alternative... more scary option. That's right, the scarier option was suggested... they would like me to go in for the 3 day assessment. It's not an out and out, you will go on the list from that assessment, but it's to prep and to see a)if tx is viable for me b)if I'm at the stage where they want me listed. The whole process has suddenly become a lot more real for me.

I'm terrified at the thought of it. I also feel strangely like I'm letting those around me down by giving up on my own body... I know it's a stupid thing to think, but I'm kind of ashamed to tell people that I'm at that stage. I don't feel like I'm there both mentally and even physically... you hear transplant, and you think of someone really poorly, not able to do much and that ain't me! I'm still working part-time, I'm still going to the gym, going swimming (8 lengths this week!) and other things that don't cause me issues... I'd feel a bit of a fraud and a queue jumper if I went on the list and got the tx before others who have been waiting for a long time and genuinely needed it more than me! But I don't want to rule it out now and potentially miss the boat and get too ill for the tx to be possible. Arg... no-one will make the decision for me either :(

It all just makes me think about the things I want to do and places I want to go, and then I get really down thinking that they will all have to wait until that magical post tx time (if it ever comes around as there is a severe lack of organs and donors out there) and even more scared that they could be things that potentially will never happen. I know once you're gone, you're not going to be able to care that you didn't visit a certain place or do a certain thing, but in the time before death, you can begrudge others doing them and get sad that you can't.

Mentally I'm in a downward trend atm... i know it's not healthy and it doesn't help anything, but I can't help it. I'm scared and upset :(

In Barbados, if it wasn't for my health, I think I could easily live there!

Trying to be positive

Despite our house sale falling through very last minute I'm trying really hard to not get too down about it. Yes it was our perfect house we'd found (and could afford!), and yes we both desperately wanted to be out of our current flat... but it simply wasn't to be. I saw a psychic earlier this year who told me that I would move house, but not this year... we wrote this off as wrong (at the time we were sold in a completed chain)... 2 failed chains later and with the prospect of having to unpack all the boxed belongings I think it is clear that he was right! Make of it as you will, but something, somewhere was making it clear we should be staying put for the time being!!

On that note (and trying NOT to be too jealous of other people I know who are moving) I've been trying to think of things to raise my spirits, and things to make me enjoy my house and life again.

I'm set to do some house improvements... when I say I'm set to do them... I mean, I have planned for other people to do them while I sit back and see things get nicer! We have plans to move the living room around, redecorate the hall and stairs and generally make things a bit fresher. This I hope will make me happy to be her for another 9-12 months (hopefully no more than that!) Oh and finish off the garden a bit more, actually buy and lay the stepping stones we talked about last summer!

I'm also trying to be better with my treatments and exercise etc. I've managed 3 weeks of swimming now. My aim on that front is to increase the number of a)total lengths swam, or b) improve the number I can do before needing a break. Although this week I didn't improve on the total number of the previous week, I felt like I managed the 6 lengths easier and didn't end up with a splitting headache at the end! Bonus! Although 6 lengths might not sound too impressive to some, remember that I am on oxygen 24/7 and my lungs are only working at about 25% of the 'normal' set of lungs so for me, I'm pleased with 6, and am eager to get back in the pool again. I'm also hoping to actually make it into the gym this week too to work on some of the resistance program my trainer gave me a couple of weeks ago. I figure, doing swimming for cardio, and gym for resistance/toning is a good all rounder to try to prevent any further lung depreciation.

I'm back on my Tobi inhaler month, which makes things easier as it means I only have to do an inhaler twice a day, with 1 nebuliser in the afternoon, as opposed to 3 antibiotic nebs plus an additional afternoon neb (my Azli months) I'm far more compliant with the Tobi, but it also makes being compliant with the other afternoon neb so much easier.... I also feel better on the Tobi months so feel I can achieve so much more with my day, that positive mind set helps me get through some of the stuff I put off when on Azli- (I'm so much more tired and therefore grumpy!)

I'm busy researching holidays too... Having my Dad enquire about how holidays would be possible now I'm on o2 all the time got me thinking, and coincidentally I got a booklet through from my o2 supplier that same week giving advice about travelling on o2. I've found an option that makes foreign travel much more do-able... just need to work out the costs of it all... but am happy knowing that another Disney holiday is not out of the question now! Woop... although not for this year :(

I'm off to peruse the holiday brochures and figure out the finances to see where we can actually get to so we can have a proper chillax!

Oh and I got my I Live I give t-shirt last week, so here's a pic of me sporting it to show that I support organ donation.

A couple of important dates

Just a short one today after yesterday's mammoth intro!

Purely to put out in the world that today is my anniversary with my lovely Glen. 7 years now :) Phew time's gone fast.

Also, not to be forgotten... tomorrow is my equally lovely mummy's birthday. Hopefully we'll get some nice weather so we can go out and do something fun together :)

I'm thankful to have 2 such wonderful people so close in my life and wanted to say Thank You and wish them well :) Let's hope there's many more celebrations ahead of us :)

The three of us together in Disney

First one... here goes!

So, I'm sat in on a rainy summer day and having seen so many people doing blogs I thought I'd give it a go... will probably only last a few entries before I forget or get bored... or both!

How rude of me... I'm Karen. I'm 27 and probably one of my most defining attributes is I have CF (Cystic Fibrosis), it isn't the whole of me, but impacts a lot of my decisions and life choices. First and foremost, I am me, then way down the list is CF!

I enjoy a wide variety of past times, and try to do as much as I can (health & wealth permitting). Here goes with my interests:

Reading- I like horror, fantasy and the occasional girly 'pastel covered' rom com type... Can't do too much of those though, need something gory or scary to break them up!
Dressing up- I know this sounds odd in itself... but I'm part of a historical re-enactment and dancing group so I am often found dressed in either Tudor or Medieval (self-made) costumes... I'm partial to any reason to dress and act as a pirate, but really, any excuse for dressing up and I'm there!
Animals- I have a lovely doggy, and one of my big wishes for life is to have enough money and land to run some form of animal rescue/re-homing place. I would have minions to do the boring/hard work and I'd just get to do fun stuff like play with the animals all day!
Jewellery/crafty things- I was introduced into making jewellery and little bits out of chain-maille by a friend, and although I don't do so much of it now, I do enjoy trying out new things... I just found I ended up with lots of bits of projects floating around as I have very little patience to get things right!
Swimming- Despite the crappy chest and related crud CF brings, I do enjoy swimming. I've just started back to regular swims after a long time off it and it's reminded me how much I do enjoy it.
HOLIDAYS- I love all things holiday... I enjoy looking at them, researching them, booking/planning them and obviously going on them! I'm not fussed even if I'm helping to plan my own, or someone else's, I just love them... probably why my favourite job (and only one I truly regret having to quit) was working at an airport. most people thought it would upset me seeing other people going abroad, but I loved it!

That's all I can think of off the top of my head... I'm sure I do more than that though!

Now, although I said there's far more to me than CF, it is a big part of my life so a little bit about it:

Cystic fibrosis is a life-shortening inherited disease, affecting almost 10,000 people in the UK.

It is caused by a faulty gene which controls the movement of salt and water in and out of your cells, so the lungs and digestive system become clogged with mucus, making it hard to breathe and digest food. (From the CF Trust website)

That's the official stuff, but for me, CF mostly causes issues with my chest. I do suffer with problems with my digestive system, but the chest causes far more problems overall! My lungs currently work at around 25% of the 'normal person' my age, which basically means my lungs have to work 4 times harder than most just to function. to combat the build up of all the goo I have a concoction of drugs (nebulisers, tablets, inhalers and IVs) which keep me ticking along. I am also trying to raise funds for a funky device called The Vest (not very exciting name I know, but I didn't think of it!) which should help me clear my lungs a lot easier than regular breathing cycles.

Up until recently, I have really struggled with my weight (also adding more pressure onto my lungs to function) however in April this year I had a PEG tube inserted into my tummy so that I can set up feeds whenever I need them. So this can basically pump through a high fat/calorie/nutrient etc mixture straight into my tummy, meaning I could have my entire days worth of calories and nutrients go into me through the night, and then come morning whatever I eat/drink is a bonus. In 3 short months I have gained about a stone in weight (6.5kgs for you metric folk) which is pretty damn fantastic... I now look and feel more like a proper adult! I even have boobs!!

As well as the common known chest and digestive problems, CF also causes diabetes which I developed last year. It can also cause bone problems (luckily mine are strong and 'normal' at present) something which could lead to early osteoporosis etc. Another thing that a lot of people don't realise, is that CF can cause a lot of mental issues (you should get to realise that I'm pretty mental on my own merits, but I mean additional mental issues). Depression is common due to the sheer burden of all the therapies and treatments etc I don't think I'm near being clinically depressed or anything, but I have suffered with some serious down points over the years which have taken a lot to pull myself back out of (mostly with the help of key friends and family) I am very results driven and if I have a bad clinic then I will sulk quite badly, whereas a good clinic will spur me on to do better.

I'm currently in the beginning review stages for lung transplant. I've met the team once, and due to go back for a review in a couple of weeks. This is a very scary concept for me and everyone close to me. A set of nice shiny new lungs would be wonderful obviously, but it comes with huge risks, both right after the op and even months and years after due to rejection. I'm not there mentally to accept that my own body has given up the fight, but it's a difficult situation to judge right- if I go on before I'm mentally ready, I could potentially get 'The Call' before I'm ready to accept it and everything that follows, but if I leave it too late, I could be too poorly and potentially die before getting that magical call. CF decisions are never easy, but this one seems the biggest and hardest at present!

I think that's probably enough rambling for now... I've made a start... now to just decide on the exact look and format of this blog... it will probably change a lot as I'm so indecisive!

(I can't figure out why part of this has gone different formatting to the rest... it's not supposed to be like that, but I'm still learning!)