General Update!

I've been out of hospital now for 12 days so far and i would say that i am doing pretty well and i still feel okay :) I've also been feeling a lot more happier within myself as well. I've been getting out the house, and keeping myself busy when i can. I seem to have found a great mix of 'drugs' that help me stay comfortable whilst i'm out and also let me actually enjoy being outside and not stressing! I take 1.25 mls of oramorph which keeps my lungs free of pain and also calms my breathing down a lot, and a lorazopam for anxiety, and it really does help. I think half the battle before was if  i was out and then started to get sore/breathless i'd start getting anxious or panic as i wasn't home where i should be when i'm 'sick'. So if i take a small bit or oramorph and lorazopam before heading out i seem to do just fine. As my breathing is better i'm in no pain and i'm not anxious about being away from home and out of my safety guard.

So what have i been up to i hear you ask? Well I've been making sure i get up dressed, and ready most days as even that itself makes you feel more human, I've been trying to get out as much as possible, taking my little brother to school and picking him up (even if i do just wait in the car) it's nice to see him running around with his nursery friends. We have had lovely weather here in Luton as have many other places, so i have taken advantage of this as best as i can, on Saturday me, my mum and little brother Cael went to Woburn Safari Park where you drive around in your car and get a close look at tigers/lions/zebras/giraffes/bears and monkeys, one monkey was comfortably sunbathing on top of a car roof for a good 5 minutes lol. And then they have a bit where you walk around and they have penguins, sea lions and lemurs .It was a great day out, i really enjoyed it. A few pics for you :)

Yesterday i popped into town to get my car washed by the lovely mall car park man lol. Whilst waiting i had a look around the shops and met up with my great friend Jodie, and had a cola float (Coca-Cola with ice cream) incase you didn't know, and then Our friend Uncle Deano come to meet us, but i didn't stay too long as stupid me forgot to take my oramorph and starting too feel a bit crappy! Wont forget that again. I do have a lovely clean car again though :) 

Had a phone call from Papworth today, blood test has shown my crp has increased a little (inflammation markers) if it's high it means infection basically. But consultant wasn't too concerned as i have been off iv's for 12 days, he said he wants a repeat blood test in a week or 2, but as i'm doing so well i don't need to go in yay :) Still hoping to spend longer than 16 days at home, and plan to keep enjoying every moment while i can. 

Now unfortunately for some bad news. 

A fellow CF friend of mine Stuart Gailbraith, passed away Sunday morning. He was just over 2 years post transplant and had started to decline, he was a real nice chap, and was always asking how i was doing although he was going through a lot himself. He was a right character and into his garage music! We had plans to meet, but unfortunately now that wont happen until our worlds collide again. Breath easy Stu, will miss out chats <3

xxx

Jordan & Georgie, my inspiration.

Jordan Carissa Caprani 29/07/1995 - 10/03/2011 

My inspiration in life is my friend Jordan, she really was one of a kind. Beautiful, funny, feisty and strong and loved by everyone. Jordan was only tiny but made up for her height with her huge personality!! If she didn't like something she would tell you, she spoke her mind and wasn't afraid to be her own person. She really was one in a million.

I've known Jordan since forever really she also had Cystic Fibrosis, i used to see her in clinic when we were younger she'd always be wearing her stripy tights lol! Then we used to be on the ward regularly together, ooh how we used to keep the nurses on their toes. We would run around playing back to base. We would sneak out the ward and go up and down in the lifts, play hide and seek (jordz would take it a step further and hide for hours from the nurses when she was meant to be going to school) lol tut tut. I used to push her around in a little spare pram they kept on ward she was small enough to fit in it lol! We used to throw water bombs out the windows using rubber gloves, she taught me how to play the dance matt she always beat me though and also thrash everyone at scrabble, and complete all the play station games before anyone else i'm sure she was good at everything lol! I really looked up to Jordan she dealt with so much but always stayed strong and determined, although she was younger than me i really admired her. It's hard growing up especially with CF and we were a great support system for each other. I was so proud to see her grow into a beautiful young lady.

Georgie Stedman 06/07/1992 - 09/12/2009/

Georgie was also a close friend of mine and Jordan. She was pretty, confident,  popular and funny. We would all hang around the ward together in our own little CF gang causing mischief! I remember we were doing the old water bomb trick out the window but little did we know we had hit a hospital security guard, he come up to the ward and told the nurses that two young girls had been seen throwing water bombs at passers by and one had hit him.. -OOPS. Nurses told us not to do it again, but you could see they saw the funny side :) Georgie and Jordan were very close, they went on a shopping trip once and Jordan looked up to Georgie as a big sister. I miss them both dearly, and it still causes me great pain that they're gone, i hate CF for taking them away from me but without out it wouldn't of met 2 such amazing ladies.



Me and Jordz together :)

  

Visiting Jordz just after her one year anniversary 

Emotions..

I've been feeling a bit down and a little bit lost recently, like I've lost control of my own body and mind. I'm loosing myself in my 'illness'and letting it define me, and honestly i don't like it. As much as i convince myself i'm the one still in control, i just feel it's taking over.

When i have good days i try to get out of the house whether it be just a drive, go on a shopping trip or to a restaurant etc but it just makes me realise how little i can actually do, i feel weak and loose a sense of pride when i'm seen in wheelchair/oxygen all though i'm not ashamed of it but when you get people give you 'the look' as in "aww look at that poor girl" I'm not that poor girl, I've had and have a good life, i'm just the same as anyone else, I've probably experienced a lot more than some of them in fact, the only difference is i don't have working lungs like theirs.

Some people have said to me "you've been in this situation before haven't you" does that make it easier to deal with? No. In fact adjusting is always the hardest part. Before transplant i was very ill, i was dying and i was prepared, then when i got my new pair of  lungs i had to adjust to the idea of health as it was a whole new way of life for me. Now i'm adjusting back into my old way's it's not as simple as oh it's alright because you've lived like this before, it's a lot harder living like this second time round once you've experienced living a 'normal' life.

Despite this though  i was having a chat with 2 CF lads yesterday and i did say to them transplant was still the best thing i ever done, and i still can honestly say i have no regrets.

Now in other news, even though i'm a bit emotional at the mo i'm quite happy too and this is why. I am feeling the best i possibly can be, my health has really taken a step in the right direction these past few days and i'm feeling the best I've felt for a while. It has been a very successful hospital stay hence why i'm still not complaining that I've been in too long although i am getting rather itchy feet (signs of getting better that) I am now confident that i'm going to manage at home, and am going to be able to do a few fun things that I've been planning to do whilst i'm home! So health wise things are looking up for now and i'm hoping my emotions will follow it's footsteps.

Thanks for reading, Ellis x

Welcome :)

Hey guys welcome to my blog :) My first post eek! (Sorry if it's a boring one not got much to report)
I decided to create a blog to keep friends updated, and also for my own sake, sometimes i feel the urge to just shout out what i'm feeling without hurting my throat and i figured this was the best way to do it. I have created a few pages which basically tells my story so far so please read.

I'm in hospital at the moment, have been in for 8 days now having iv's and physiotherapy and also succeeding in my mission to gain weight, put on 2kg so far woohoo! Not loads but a good step in the right direction. The extra weight should get me a little stronger, and help fight off my infections easier and hopefully keep me out of hospital longer than 2 weeks at a time!
On ward round this morning my consultant said he will think about home on Monday. I'm not listening to that, I've learned never to believe that your going home until your in the car about to drive away. lol.
Anyway i know when i'm truly ready to go home as i'll start getting itchy feet, moody and bossy! That's not quite kicked in.. YET.

This admission has not been too bad actually i know a few people who are in at the moment too so it's nice to have someone to talk to. It hasn't particularly dragged either. I think it's bearable when you can see your improving. I'm walking a lot further than i could manage before and i am not breathless when i'm just sitting. I even managed to go for a drive yesterday only to Tesco's which is 15 minutes away but before even the thought of driving would just tire me out., so yay for me. I also finished my Jodi Picoult book i was reading called 'Change Of Hearts' read it within 2 days, i was quite impressed with that considering I've not read a book in years, well other than one of my 4 year old brother's Gruffalo or Bob the Builder books to him, does that count? lol. I've stocked up on my book collection now and i shall try to keep up the reading.

I have my lovely friends and family coming up tomorrow which is good, weekend's can be rather boring in hospital, especially when it's quiet. For now though i have chocolate, coke,  marshmallow's and DVDs including the first series of 'Miranda' everyone rated it so thought i would give it a try. This shall keep me occupied until my little brother gets here with mum, not seen him for over a week!! He has gone to nursery dressed as his favorite book character this afternoon (Harry Potter) haha look forward to seeing him, will add pictures if he is willing to stand still long enough for a photo lol.

Like i said sorry if it's a bit of a boring post, been working on my blog all day, still not how i want it but tired now and my bum is getting sore from sitting in the same chair for a few hours as it's the only place i can get  good internet signal.    


Harry Potter himself :)