Our 1st Years Wedding Anniversary!

I’d like to start this blog with a huge thank you to everyone that read, shared and sent me a message regarding my last post. The response I received was overwhelming, I didn’t expect such a reaction. It was the blog I found the most easiest to write as it all just came pouring out my head as I began to type, slightly morbid I must admit but it was honest and that’s all I try to do as I sit here writing about the highs and lows of my life. It felt like a huge weight had been lifted off my shoulder’s as I came to the last few line’s, I did have tears running down my face the entire time I had was typing but it was a good release of stress and upset I had built up, so thank you for all your ongoing support to everyone that has followed my story.

I don’t have a lot of exciting news for you this week, in fact the very opposite. I myself have been bored out of my brain and struggling even more than I usually do as managed to catch a cold virus off someone which went straight to my chest and made breathing and getting around near on impossible. My nose has been streaming, I am constantly getting hot and cold sweats, a sore throat and disgusting cement like gunk that is stuck to my insides and impossible to cough up. I am exhausted as it keeps me up all night and once a coughing fit starts the panic sets in as my nose is blocked and I can’t breathe from either my mouth or nose despite being on my oxygen. Luckily my CF nurse came to me on Wednesday so it saved me from having to leave the house, but I have had to cancel all visitors as felt so rotten and obviously didn’t want them to catch anything from me. My entire week has consisted of mind numbing daytime TV which I cannot fucking stand and lots of snake cuddles, so thank christ for my beautiful babies for keeping me sane!! Stefan helped me with a shower last night but I found it so difficult, it was so painful to breathe and I am absolutely exhausted today. I hate so much when the simplest of tasks (even with help) are completely soul destroying.

It’s finally the end of the week and although I’m not over the worst of it, I’m determined to go out and get some fresh air with my husband at some point over the weekend. I cannot bare another two days straight in my living room. I’m hoping that it will do me the world of good so I can start feeling better for some up and coming celebrations.

This coming Monday, 2^nd July, will have been a whole year since I became Stefan’s wife. I can’t believe just how quickly the time has gone and we have already been through so much together. I remember the day as if it were yesterday, we had the best weather we could have ever have wished for, it was soooo hot! I barely had any sleep yet somehow I had so much energy I was making bacon sandwiches and pouring Asti for my bridesmaids and friend Jeanna who was styling my hair at 7am in the morning! My ride in the playboy pink fire engine was crazy and such fun, the driver was blaring out the tunes, anyone would have thought we’d be on our way to Oceana nightclub! The service was unforgettable, it was extremely emotional, I was crying, Stef was crying, I’m surprised we were able to say our vows, but it was the most beautiful day and I had the time of my life. It was great to be able to share it with family and friends. I would marry him all over again tomorrow. It may have taken me a few years of pain and getting myself into a complete mess that I didn’t know where my life was heading, but you found me, you saved me and you showed me what love was and for that I will always be grateful. You are my true love, my soul mate and my best friend. Here’s too many more years of happiness, thank you for making me your wife and a huge part of your life. I love you Stefan Kneil.

Signing The Register 2nd July 2011

Our Kiss

My Emotional Husband

Confetti On The Bench

　
　
Thank you for reading… xxx

I Don’t Want To Die

I know I only wrote a few days ago but I thought I had better update you with what happened at hospital yesterday and the thoughts going through my mind endlessly as they are still fresh. I know it must sound odd, but I never see myself as a really poorly person. I have never let Cystic Fibrosis control my life, and although in my past some people would use it as a weapon against me, I have always been Kimberley, who just happens to have CF. I may have the odd moan and rant on facebook about feeling rough, but to me it’s nothing more than one of my friends saying they have a headache and they wish it would just fuck off! It really hits home when you have your medical team using phrases such as “well we can’t do that because your body won’t be able to take it” or “we see this occasionally, especially in extremely ill people such as you Kim”.

I guess I better start with my clinic appointment yesterday, I usually dread the whole embarkle of it. All I can think of is it’s just another few of my hours of my life wasted away, where nothing is ever really said, in and out and usually a hell of a lot of waiting about as people are so busy. Yesterday however was different, it felt different and I actually was comfortable being there for those few hours. I had a lot of one to one time with my CF team, both my CF nurses and my physiotherapist, and then the conversation with my consultant. I felt at ease as they were able to spend the time with me rather than flapping about like they usually do as clinics tend to be so busy. I had a few giggles and was made lots of mugs of hot sweet tea, one of my nurses even came to the X ray with me and then got me some lunch. Seeing my consultant was productive, although it wasn’t how I had hoped it would go. We discussed all aspects of my care from how much I’m getting out of the house to what medications I feel are not really working for me. I needed to bring up the subject about my womb and the problems I had been having, I said that I would be happy for them to try again investigating as long as I had some sort of pain relief and some entinox as was originally planned at the time of my last appointment but never actually happened. His answer wasn’t what I wanted to hear, they think that I have some type of cysts in my womb and opening of my cervix, the investigation of course would tell them exactly what the problem is but the treatment if this is the case is surgery and my consultant is worried that having found out what the cause is, they won’t be able to do anything about it. Unless it is life threatening, I am not allowed to undergo any surgical procedure by general anaesthetic or even sedation of some kind. He explained that because of the severity of my condition and obviously the fact I am now on the transplant waiting list for new lungs, they would refuse point blankly against any treatment of this kind as my body just wouldn’t be able to cope under the pressure of being put to sleep. I was understandably pissed off, not that it’s his fault, of course I can understand the reasons, but due to the fact of my situation in the now, CF has once again put a stop to something else that would so easily be fixed in the norm…

I explained about the pain I had been getting and the swelling at the front of my chest, just above where my snake heart tattoo is, he had a feel and sent me for x-ray just to see if there was anything untoward. I didn’t see him again after the x ray but my CF nurse did show me the scan, I now wish I had taken a picture so I could show you what a state my lungs are in…. From what I could see, there were two fifty pence piece sized black holes on either side of my lungs, this is the good bit! The tiny part I am basically able to breathe from, the rest a cloudy white mess and right where my pain and swelling is, a solid white mass. Verdict, new lungs needed!
Just before my consultant left me to the rest of the team, he said he would try his best to get an investigation done regarding the womb, but problem being that they won’t be able to do anything about it once they have found the cause, and secondly, he would write to Dr Carby in Harefield, (as I am up there next month) just to outline the severity of my situation once again and how much I am suffering. Not that there is much you can do of course, there is no ‘top of the list’ but to hear him say those words really hit home of the seriousness and complete need of a phone call very soon.

Cystic Fibrosis can affect you in so many ways, people just wouldn’t expect. I am really missing the intimacy a man would have with his wife. God knows we try, but what I would kill to be able to give my husband a proper kiss. I long for the day I can kiss him over and over again, one of those kisses you would hear someone say “Look’s like she didn’t have anything for breakfast, she’s eating him alive!” if you were to do it in public. For the time being it’s little pecks, linger any longer and my breathe is literally taken away….
It’s the same before bed, I love cuddles, and my husband give’s me the best, but unlike any other couple that can snuggle away and fall asleep in each others arms, I literally can only have a couple of seconds of Stef’s embrace, otherwise the weight of his arms crushes my chest and makes it even harder for me to breathe, (if that’s possible). I know he wouldn’t do it as our love is unconditional, but I often think why does he put up with this when he could have a fit healthy girl without all these complications.

I had a really bad time though the night, Stef would try and comfort me but I hate making a fuss and disturbing him as I know he is up for work early. As I lay there in pain and struggling to breathe, tears tolling down my face I thought how hard it would be for me to say goodbye. I’m turning 29 a fortnight tomorrow, a milestone for a Cystic in my eyes. Especially when only a few years ago I was in intensive care and recovery for four months thinking I might not be here today. However, I know these days Cystic’s are living even longer, and especially as turning 30 when your fit and healthy is when they say your life really begins. I’m petrified if my call doesn’t come soon I won’t see my 30^th. I’m fighting my corner and being as positive as I can be, I’m not ready to go yet. I just need some more time please, time to be a loving wife. A mummy to seven snakes! A daughter, a sister, a friend… I just want more time to be me.

Thank you for reading… xxx

A Slight Change In Attitude & My Stiffy’s Turning 23!

Mereopenom hasn’t treated me well this time round, it’s usually the most successful iv to help with my infections, but I’ve been struggling more than usual. My week seemed extremely busy even though I had nothing in particular planned and although I didn’t actually get out of the house until Friday afternoon, I didn’t seem to get much rest.
My sisters skydive was postponed just before the weekend due to high winds, she has three months to re-book so I will let you know the date as soon as she has spoken to the team again! She’s only a little way off her target now so I want to say a big thank you to all that have sponsored her, as it’s still yet to be done, this gives us a little more time for her to hopefully smash her target and raise as much as she can for the CF Trust, please if you can, donate now…. http://www.justgiving.com/Lauren-Hutchinson0

I managed to get out the house a few times over the weekend, despite feeling like shit, Lauren took me to the cinema on Friday to watch Snow White and I was back home again in my pj’s ready for a quiet night in with Stefan and the snakes watching the England game… On Saturday we were out for a couple of hours during the day then I got to see our gorgeous nephew Jack, he turned one in April and I cannot believe just how quickly he is growing! He really is such a good boy but it’s nice to give them back after a few hours, I tire so easily I don’t know what I was thinking wanting a baby so desperately a few months ago!!A friend we hadn’t seen in a long time popped into see us in the early evening and I suggested going for ‘one’ drink across the pub, so Stef got me in my chair and filled up my oxygen. The ‘one’ became ‘three’ and before we knew it we were out the whole night! It was a good laugh and I had no regrets… I always find the best nights are the ones unplanned.

Jack, Our Nephew

I seem to be thinking that more often these days, no matter how rough I’m feeling I don’t see the point in just waiting for CF to get the better of me, it already has done to a point hence being listed for transplant, but I don’t know what the future holds and I’m fed up of watching life pass me by. I’m starting to not give a fuck about people’s comments or stares, if I have the smallest bit of energy for Stef to take me out and socialise then I’m going to do it. I’m extremely good with my money and always like a little bit tucked away for a rainy day, bills have always come first in my book, then what’s left is to save or spend the way we please. My attitude towards that is changing slightly too, not to the extent I would ever get myself in money troubles, but just when I would use to think, “I’m not wasting that when it could be saved in my bank in case this happens or that…” But life is short and you can’t take it with you. If I can have a couple of hours out with my husband and friends I’d much rather enjoy that then sit at home thinking I wasted my life away watching mindless shit on tv and letting this disease take everything from me…

Just goes to show that thinking about things going wrong does pay off also though as after a few hours out on Sunday looking at things for the house we got home to cook a roast chicken and bang our gas cooker went pop!
You just don’t expect these things to happen and they aren’t cheap to replace, luckily I have been able to order just a bog standard one to be delivered and fitted this Thursday but from now on I’ll have to be very careful with spending for a while… Stefan has been moving things around in the house to make the most of what we can with space, the furniture we have plus all our amazing snake babies. We have moved my bar into the kitchen after selling my table and chairs and now have so much space in the living room, it feels really comfortable again and I just love being able to relax in there. Our bedroom is coming together too, what with the new bed and matching tables and bed side lights I’m just waiting on the linings and Stefan to hang the new curtains. I love making our house into a home, slowly things of mine back when I was living on my own are disappearing and we are building our home together, making it look and feel the way we want it to as a loving couple, which gives me a huge smile when I think back to a few years ago and what a mess I was in.

Talking of my wonderful husband, he will be celebrating his 23^rd birthday tomorrow. Even if we had a working cooker I said I would treat him to a takeaway of his choice in the evening regardless, so that’s the dinner sorted. He is working and I am up in Exeter hospital again actually seeing my consultant for once in clinic (I haven’t seen him for a good 2months) and having my iv’s changed. Not a very exciting day but I’m pleased we get the evening together to relax. I’m not to sure on the plans for the rest of the week or the weekend as usual I take it as it comes, but I’m sure a few celebratory drinks will be on the cards if I have anything to do with it!! I only wish I could whisk him away for a surprise break that he really deserves. Happy Birthday Stiffy, you are my absolute world and I’m so thankful to have you in my life. Love you to the moon and back…..

Happy 23rd Birthday Gorgeous, I Love You With All My Heart & Soul

Thank you for reading… xxx

What We Did Over The Queens Diamond Jubilee & Stefan‘s Week Off…

I can’t believe it’s already Monday morning and the week Stefan had off work has already been and gone!! Unfortunately it didn’t go to plan the way we would have wanted it to but we did try and make the most of things when we had the opportunity.

Instead of boring you with endless descriptions, I will upload some pictures and show you what we got up to on the good days! I am not feeling well at the moment, I was struggling just before the weekend and its rapidly become worse over just a few days, hence why I don’t feel like I can blog too long. It could be a possibility that I over did it, but maybe the iv’s I’m on just aren’t hitting the infection as well as it could be. Either way, I can’t just let my CF take over when my husband has time off and gives me the chance to get out the house and spend some quality time with him. I’m just relieved that other than my cf nurse coming over on Wednesday, and hopefully our shower finally being replaced during the week, I actually have no plans and can try and give my body the chance to rest. As I’ve said many a time, I’m fed up of just existing and although we only had a few days where we could make the most if it, I’m glad that for those short few days I had the chance to ’live’ again.

My poor husband became extremely ill during the week off and for once our roles were reversed and I was able to take care of him and all the babies. I was completely exhausted after it, but the strength certainly came from within, and I did my upmost to do whatever I could to make him more comfortable. I hated seeing him suffer. He went to our local hospital to see the GP and have injections for the sickness on Thursday evening, he is still suffering with some tummy pain currently, but I’m happy to say he is a lot better than he was and we were able to enjoy ourselves over the weekend once he was over the worst of it.

Just before I go and load up the photo’s for you, I do have the news of two things that have made me smile the most this week. Firstly, the American TV programme Stefan & I watch, Swamp Brothers, one of our favourites aired on Quest, as it’s all about Glades Herp Farm in Florida, snakes, crocs and gators!! Well I became friends with the brothers themselves on facebook last week and one of them read my blog, tagged me in a post and shared it on his fb page for more awareness!! They are currently doing a castaways for cancer trip at the moment and then going on vacation but he messaged me the other day and said when he was back he would send me a signed photo!! I was absolutely buzzing! It’s very rare you can get such one to one feedback from a celebrity and for them to take notice of little old me was just brilliant and I have been on a complete high ever since!! Secondly, we have a beautiful new family member! After hospital on Wednesday, Stef took me to Exeter Exotics as we needed more food for the babies and I had a look at this gorgeous little pastel royal that was posted on their page for sale. I was already in love from the photo but as always a picture can never do it justice, my heart melted and he came home with us that day as my birthday present from Stef & the other babies. He’s a very special little boy as due to incubation problems he hatched out of his egg with a kinked tail! This hasn’t affected him in any other way, he still eats, poops and can move with no problem, it just means it is advised not to breed from him and that he has well, a visual disability. He is absolutely adorable and has settled in brilliantly, he’s our youngest baby after hatching in April and we have named him Zante. Although I feel so poorly at the moment, I never let this come between caring for my snakes. It’s the only thing that makes me feel better, that and cuddles with my other half of course…. Hope you enjoy the pictures I‘ve shared with you, I will hopefully write again when I’m feeling a bit more human.

Saturday 2nd June, my friend Sarah's Baby Shower, lots of food & giggles!!

 

The Boys at Gemma's Surprise Birthday Party on Sunday 3rd June

Gemma, her little sister & I in her garden during her party

Our New Comfy Bed!!!

Stephen Keszey from Swamp Brothers tagging me in a post!!

Me on Tuesday 5th June having a few drinks in Paignton

Stefan & I in The Factory in Paignton

My New Baby Zante

Gorgeous Little Pastel Royal Python

My School Reunion At The Riveria Centre, Torquay, Friday 8th June.

Stef &I with my old class mates. A great laugh!

My School Reunion. Pictured with my best friend from school, Kelly, & my Deputy Head Mr Shelton & First Ever Teacher At Steps Cross, Mr Knibbs!

Best Friends At School Reunited.

Steps Cross Special School, Watcombe.

8th June 2012

Thank you for reading… xxx

That Friday Feeling….

It’s Friday 1^st June!! Wow, June already? Where the hell has this year gone? I’ll be turning 29 in exactly 5 weeks today!! My dearest husband will be turning 23 (yes you did read right, 23! I’m a cougar!) in 2 and a half weeks and I will have been on the transplant list for 5 months on the 27^th…. Its absolutely crazy how time and life passes you by without you even realising it.

I won’t go into huge detail about the last week as to be honest, the majority of it was nothing but boredom and stress…. We managed to have a nice weekend, I got out on both days for a few hours, saw some family and had a bite to eat in a pub or two, the sun was shining although it was very windy, but all in all it was really quite pleasant.
Then came Monday and I was bored shitless, as was Tuesday and Wednesday, although Wednesday had the added stress of a plumber calling round to confirm our shower was completely knackered and we would need a whole new unit. Not the news you want to hear in muggy weather like this, and how long that is likely to take god only knows. The plumber himself was a lovely bloke however, and just as he left I noticed a hissing sound coming from the kitchen, walked in to find my feet soaking and the kitchen floor flooding from under the sink. I don’t think I have ever moved so fast, despite limited movement usually, I somehow managed to fly down the stairs and bellow out the plumbers name before he drove away, luckily he was actually talking to another neighbour in the courtyard… He came back up and started repairing whatever it was that had burst whilst I tried to recover from my sprint. I was absolutely exhausted. I then spent the afternoon slowly clearing up the soaking soggy mess, chucking out all the boxes that had been ruined from under the sink and putting all the cleaning contents back under it. Why do we keep so much crap under the kitchen sink when that is the most common place to spring a leak?? Anyway, that pretty much put me in a foul mood for the rest of the day, I had a banging headache and was feeling really poorly so became the most intolerable bitch for a good 24 hours. I didn’t want to speak to anyone!!

Thursday was a new day and I had my friend Hayley come and take me out for a few hours, my first day of fresh air since the weekend and I felt a lot happier. We went to the Inn on the Quay and had lunch outside. I was back home again by 2.30pm and then spent the afternoon having snake cuddles. Today is Stef’s last day at work before his week off! I literally can’t wait for this evening to come after he finishes the gym, knowing we have a lots of quality time to spend together. We have a few things planned, Wednesday is pretty much a right off as I’m in hospital having an iv change, the dreaded Mereopenom which always knocks me for six after the first dose, but hopefully I wont let it ruin the last few days he has off towards the end of the week.

It’s the Queens Jubilee this weekend, I have to admit I’m not a royalist, it just doesn’t do anything for me but I imagine the atmosphere and parties that are being held everywhere will be brilliant. Tomorrow afternoon I am going to my friend Sarah’s baby shower, then throughout the week I think Stef and I will be trying to have a few BBQ’s here and there, maybe a picnic on the moors and a cinema visit. As its half term I’m limited to things we can do, as I’ve written before just how busy places can get with children and families and I’m restricted if I’m out in my chair to do a lot or see things if we were to go to the zoo or aquarium again. Either the bank holiday Monday or Tuesday I want to do a pub crawl in Paignton however, we’ve not done it for ages and I’ve always preferred day drinking to going out at night, I just find it so much more relaxed. We’ll be asking people along, the more the merrier so if you fancy taking your chances on drinking me under the table then come along!! We’ll just take the week as it comes with other plans, it all depends on how I am feeling and what the weather will be like and so on. The only other thing that is set in concrete is next Friday night, my school reunion which is something that cannot be missed! I’m excited, don’t get me wrong but I’m also extremely nervous!! Teachers and students will be there, people I haven’t seen in years and years but have ever forgotten. I think that will be a night that much alcohol is consumed!!

I will take photo’s along the way and I might make the next blog a picture diary of the things we did and got up to. I’m literally counting down the hours now, Stef should be home from the gym around 8.30pm tonight so as the afternoon goes on I will certainly be getting that Friday feeling ….
I hope all of you, wherever you are and whatever you get up to, have a fabulous bank holiday weekend!! Pimm’s O Clock anyone??!!
　
Thank you for reading… xxx