Wednesday, 31 July 2013

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

Tuesday, 30 July 2013

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!)