Monday, 7 October 2013

She's the one I call my sister

I came across a blog today which has got me thinking I mean really thinking and I can't seem to forget about it and it's bothering me so I have decided to just write it down !

So this blog I read the girl writes about her life with CF just like I do now I read a lot of blogs and stories about others who live their daily life's with CF I find them inspirations and it's good sometimes to hear about people living the same way I do. However this one really stuck out for me you see I started this blog to let people in to my life and let them see how CF really effects me. I know some of my blogs are lets just say "depressing" but I am just being honest. After reading this particular blog though I have learned not to be so selfish !

She writes in this one blog so highly and beautifully about her sister. She talks about a book she read once called "my sisters keeper" you will have heard of it I'm positive, I have read it and cried, saw the film and yep cried, it's overly emotional. If you haven't saw it it's about a child who unless she gets a perfect match of core blood she will die, so her parents have a "test tube baby" a baby genetically designed to save the life of her sister once born. Although highly emotional it's a brilliant film and book I loved it, now after reading what this girl blogged about it's sent my mind into overdrive.

She writes about how her sister has always been there for her through the hard times due to CF and how she couldn't have done half the things without her support. She then goes on to say something that got me, she says "was my sister born to save me" referring to the film and how the younger sister was born to save her older sister, now this CFs sister wasn't a test tube baby nor born to save her as that's impossible and not how CF works, but that statement just made think about me and my sister and our relationship.

My sister is 2 years older than me, she is my only sibling, she is only a little taller than me, she is beautiful though way prettier than me although people say we look alike so I can say I'm a little pretty ! Only joking I don't want to get big headed here. She doesn't have CF or carry the gene, this makes me unbelievably happy you have no idea ! We get on so well don't get me wrong we had our years of fighting and I used the CF card as an excuse for her not to hit me back after I hit her all the time something I really regret now (sorry cait). However now we get on so well always have really.

She writes about how CF not only effects her but how it has effected her sisters life too in more ways than one. It really has got me thinking how this illness has effected my sister too. I have so many questions now I feel are eating me like, did I take away any of her childhood due to me being ill ? Did she get enough attention from both parents as they nursed me when I was sick ? Did she miss out ? And now as I wait for transplant I am even more ill and need constant care and attention from both my parents, Caitlin can care for herself and her son however this is probably when she could use her parents the most am I again taking up all of their time ? When will the roles reverse ? When will she finally get the attention she needs, she deserves ? All these questions are tearing me apart and I know I will never know the answer as nobody is going to answer them.

The blog got me thinking how could I be so selfish ? I have lived my whole life  fighting whatever CF has thrown at me and I am really strong together person who certainly won't give up without a fight but what I have not really thought about until after today after reading that blog is it's not just me fighting but my sister fighting too with me. From a young age Caitlin knew medical terms like portacafe, nebulisers, intravenous antibiotics etc, she could probably tell you the meaning of each of my daily medications, something no child should be familiar with right ? All through my childhood I spent a lot of my time in and out of hospital and not once did cait complain or act up for both my parents nor did she make things difficult for them, she just got on with it as she thought the CF life was normality again something a child shouldn't be familiar with. So how could I be so selfish as Caitlin has also been fighting CF alongside me through my darkest days, she has witnessed some truly terrifying moments but by my side she has remained. Since I have become more ill she is even my carer so my mum can work, doing everything for me from making meals to doing my daily treatments even my ivs, she looks after me Monday to Friday weather I'm in hospital or at home, I wouldn't have anyone else (only my mum who looks after me the rest of the time) I know cait also wouldn't have it any other way for that I'm am truly grateful.

I know both my parents gave me and Caitlin equal and unconditional love since the day we were born and they made sure cait wasn't left out in any way. They made sure that CF didn't control her everyday life like it did mine but it effected her that was always inevitable something they couldn't control. Cait now has her own child to look after and with Oliver's brother or sister on the way my biggest worry is that they will miss out on their grandparents or worse their mother as they once again look after me ? Oliver has visited me from the day he was born since my hospital visits have  become more frequent. He has always been so well behaved never complains when he comes up it's like he knows I'm sick and the hospital environment so he has to behave. Nothing bothers him medically. Although I am so grateful it does make me wonder is he already used to hospitals ? He doesn't take his eyes off the nurses when they are treating me, the worried look in his eyes when I go into a coughing fit, is he going to have the same childhood as Caitlin ? This is why I need that call more than ever because I need to give Oliver and this baby on the way a healthy auntie Chloe and also give my sister a "normal" sibling and a life that doesn't involve hospitals as much.

So this statement this girl made on her blog "was my sister born to save me" well I believe Caitlin was born to save me but not by giving me blood or organs or anything medical no I believe she was born to help me in my fight, she was born to give me true strength, she has helped me in many ways she does not know for that I am so thankful.

She's my role model, she's beautiful in so many ways, she's my carer, she's my inspiration, she's my sister and I love her more and more each day.

Caitlin is my one and only sister and she was born to save me !

Thursday, 3 October 2013


Pain ! It's something that controls us all is so many different ways. It can make us go crazy and make us do absolutely anything to make it disappear. It can control us both mentally and physically depending how lucky you are. See I believe I have let's just call it an average pain threshold now I am not say for one second I can deal with pain and doesn't bother me no not one bit all I'm saying is I am quite good at not letting it show how much pain I'm actually in. It's funny how what pain can do to a human and it affects them personality and everything it's like it takes over and nothing else matters anymore but to source the pain and get rid of it ASAP well that's how I see it anyway strange right ?

So I may as well start with I got home last week finally woohoo ! Even the first night in my bed was heaven it's normally a little difficult to get used too but I had a great night sleep. Over the next few days I saw family and friends it was like a train of people coming to visit again just the way I like it. Saturday I had a rough day and we really thought we were going to have to phone and go back in but I picked up as the day went on and was much better at night. I even got to have a wee sleepover with Oliver it was the best he's so funny now his little character is shining through. I would refer to his cuteness as a emotional type of pain one I just love ! So the days passed and I remained home each day at home was a bonus to everyone and I am always grateful for a spell at home no matter how long it may be.

I woke up yesterday not feeling so great at all so Caitlin started the routine of oramorph and lorazepam, then we tried so back to back men's she also put my oxygen up on the concentrator to see if that would help unfortunately everything we tried just didn't work so it was that time again to phone the hospital and see what they had to say. I knew the answer and before I knew it the ambulance crew were there along with mum and we headed to gartnavel. Although I was completely gutted to be going back to hospital I know it's for the best and I did manage nearly a whole week at home which is actually really quite an accomplishment for me !

Once here it was decided I would go back onto my stronger ivs of doripenem and Tobi, I don't mind it's just dori is an infusion for 2 hours 3 times a day so I guess you could say it's pretty restrictive but hey ho it's not like I have anything better to do wait no I DO I should be out with friends, I should be out drinking, I should be at college, I should be planning holidays, I should be taking my nephew out all the time to wherever he wants to go ! There is a lot I SHOULD be doing yet here I sit doing nothing really except waiting for these lungs I can feel my patience wearing thin and I'm trying so hard to keep upbeat but it's getting harder and harder. So like I said in my last post I need a hobby and I might have just found one box sets yep I love tv so why not start collecting boxsets so I have started with criminal minds and private practice and see how I go that should pass the time nicely.

Right now your up to date again back to how I have been feeling honestly not so great the pain in my sides and my chest is overwhelming sometimes it used to only be when I coughed now it's when I breathe too I really do hate complaining as I just don't see the point in wasted energy but this hurts and it's wearing me out a bit. I know it's just the poor condition of my lungs now and my muscles getting worked over time when I'm coughing and breathing so hard. Pain it really can control you and like I said I think I am quite good at dealing with it (no I'm not asking for a medal) but paracetamol and oramorph are not even touching this kind of pain I just hope I get some relief soon a break would be nice haha who am I kidding !!

Wednesday, 25 September 2013

Time for a new hobby ?

I need a new hobby, something to focus on, something to keep me busy ! You see recently all I seem to be thinking about is transplant or anything that has to do with transplant or just CF in general and I can quite safely say it's driving me insane.

It's my own fault really but I have been following a few different transplant stories online like on Facebook and twitter and some people have created a blog just like I have. I love to hear the success stories that really makes me happy but some of them have not been so successful and I know I should just stop reading but I can't bring myself to stop it's like an addiction, I NEED to keep reading, I just need to know the ending whether that be good or bad !

When I went for my transplant assessment back in march I was well warned that this was a huge deal and my life would change dramatically even after transplant I could hit many hurdles, in my head I was thinking yeah okay that's fine as I can't go on living like this so how bad can "hurdles" be ? Well reading some of these stories it turns out they can be really bad. It's starting to scare me I need to learn to not read the bad but only the good I don't know why I feel the need to torture myself like this I guess I am just to nosey for my own good, not a good trait to have I am learning.

In other news I am getting home on Friday yep HOME I can't wait I have been here for 3 weeks too long this time and some time at home is much needed like I said I am about to go insane so a wee bit of normality will do me the world of good and hopefully I get to stay out for a while I am aiming for a week and then we shall see how I go, day at a time with me these days but hey ho I'm not complaining not one bit ! I think we finally have the sickness under control too it looks like it was the increased dose of my MST so that has been lowered which is also good for making me less drowsy so I am feeling a bit more human again thank god !

Friday seems so far away just now !

Thursday, 19 September 2013

Auntie of 2

I made a promise that my next blog would be more positive and more happy. So as promised this blog will be happier.

Let me start with the most amazing news that I am going to be an auntie again ! It's funny isn't it how the news of someone having a baby brings so much joy and happiness to everyone around them. The news of my sister being pregnant makes me so happy it puts the biggest smile ever on my face. I still can't believe Oliver is going to be a big brother, he will be the best big brother I know it. A baby just brings so much happiness especially when life is so hard for us at the moment. The news has brought that extra strength in me to keep fighting hard and never stop. I need to be the best auntie I can for Oliver and now this new bundle of joy.

I only have one concern though, how do you have enough love ? I mean I can't even begin to explain or put down in words how much I love Oliver so how am I too love another human being the same ? Equally ? I can only try.

Unfortunately I haven't had the best week health wise and I know I said I was going to keep this post happy which I have partly. I have really struggled mainly with sickness and breathing, it's a constant battle. However my doc upped my MST (long acting morphine) dose and finally it seems something is working that and the change in IVs. I think it's ivs making me feel so sick but I guess you can't have it all. Also the new MST dose has made me quite drowsy and the last few days seemed to have rolled into each other, hopefully I get used to it soon and get back to feeling like myself again.

I have been struggling to get to sleep at night, finally nodding off around 2am each night it's not good for me I need all the sleep I can get so I can put in extra energy into breathing. It's at night when I feel the best and think the most. I like to watch DVDs and surf the Internet. I try to go to sleep but it just doesn't happen maybe I need someone to knock me out with a hammer that might help.

I managed to get out on pass last weekend for my cousins christening I loved it to get out and see family it always makes me happy. I must admit I struggled a bit but got through then me and mum went home where I just fell asleep before my dad brought me back to the hospital. I loved being at home even just for a few hours it's just amazing I never want to leave.

We have decided to throw a Halloween party where it will be £5 a ticket to get in and all the money raised will go straight to the CF Trust. There will be raffles too and other things going on to raise money. Things like this get me all excited I just love having things too look forward to and have things planned it takes my mind off transplant even just for 5 minutes as it seems to be all I think about these days. Having this to look forward too and to help plan will keep me busy enough.

So that's really all I have to report this time it's all exciting with the new baby and fundraising stuff going on it's always a busy time in my family but that's just the way I like it !

Monday, 9 September 2013

Just breathe

It's supposed to be easy, supposed to be something we do each minute of each day without giving it a second thought, it's supposed to be natural. Breathing is supposed to be easy for all of us now having CF I am well aware that breathing can be hard sometimes but this week breathing has become like a war zone, a constant battle and I am exhausted, the front of my chest and my sides are aching as my muscles work over time while I struggle to breathe. I knew this journey to transplant was going to be hard but I wish I had known just how hard it was going to be.

The last time I wrote I was at home I was struggling a bit with a few days of temps and just not feeling 100% so after 4 days at home I'm back at gartnavel again ! What can I say I guess I just love the place. Again I'm gutted but know it's the best place for me right now. A week has nearly went by and I have really struggled through needing oramorph and lorazepam every hour just to breathe, this has made me so sleepy. Also the IVs are making me feel sick but there's plenty of good anti sickness for that. So here we are back here again but after nearly a week things are not any better even though my CRP is up and down it's not horrendous which is a good thing,

Today had been hard I guess it was all a bit to much and I lost it emotionally crying in front of my doctor nice one clo ! He has decided to start a new IV tomorrow so hopefully in the next few days I start to feel better its an infusion though so will be here for another two weeks but I need to feel better I can't go on like this. Like I said I got upset so did mum it was like let's see who can cry the most ! I know my doc felt bad but it's not his fault it's not anyone's it's life and it's just how it goes I don't blame anyone that's not fair.

I guess people just don't get it I mean what it feels like what it really feels like to fight every breath you take I'm not being dramatic here it really is hard and this week has took alot out of me but I proud to say I'm strong and one small fighter (all 4ft 11 inc) of me. I have only been waiting 5 months for transplant but I need it so badly I want it so badly it's one of those amazing gifts you think I will never get that it's to expensive or I'm not cool enough for that but if all I had to do was pay for new lungs I'm sure I would find the money somehow.

I was roaming twitter last night I noticed I had a new follower so I decided to check them out turns out she's a CF and is also on the list, so I was looking at some of her tweets as you do and this one tweet took my breath away. She had tweeted that she had been waiting for 40 months on new lungs now and would never give up hope. To me that's inspiring and so strong I hope she gets that call soon. And here I am having a meltdown after 5 months, it makes you stop and really think for just a minute there's always someone out there having an even worse time than me. I know people are only asking and trying to be nice but it really annoys me when people ask 'so have you heard anything about lung yet' I mean really ? I know they don't understand how it works and I try to remind myself they just don't get it but it does get annoying.

The settings on my NIV have been changed today allowing me to gain a bigger breath this has really helped and made for the first time in nearly a week breathing a little more easy and I have not had to have any oramorph or lorazepam all day I am totally exhausted as I have probably worked a bit harder than usual but that just means I will hopefully sleep soon.

I am missing home so much these days it's the.simple things you miss like my own bed, my tv, my room, the couch just my home in general. I miss my old life so much I feel so restricted now I hate not being able to just get up and have a shower without help or making food for myself. The past few days I have just wanted to take this mask off my face and be able to breath without it and the oxygen. I also just want to escape go somewhere nice the beach again to feel the sand between my toes and hear the sound of the waves also the wind in my hair it's my idea of heaven. Hopefully I will get on holiday after transplant one day soon until then I have a good imagination luckily.

Well my eyes are rolling now and I think I have you all up to date sorry it's quite a depressing one but writing it really helps me cope I am a really positive person I promise my next blog will be happier.

Monday, 2 September 2013

Feeling good

Nothing makes me happier than starting this blog with the great news that I am at home right now. I got home on Friday after just a weeks stay in hospital one of my shortest stays in over a year. I have changed one of the IVs which I'm am currently doing at home right now it's only twice a day and seems to be keeping my lungs stable right now.

So time to get you all up to date then, Friday was a good day my sister came to pick me up (incase you didn't already know she looks after me during the week while my mum is at work I can't thank her enough she really is a great sister and I love spending time with her it really makes me happy) she had to learn how to do the new IV drug but as usual she was a natural. So we got to leave just before lunch we couldn't get out quick enough. Once I got home I chilled for a bit then Lauren and Oliver arrived love seeing them, then everyone stayed for some dinner it was great. Me and mum stayed up quite late then decided to go to bed after some criminal minds.

Unfortunately Saturday morning was pretty rough I had a temp and was really struggling to breathe, honestly I could really have done with some new lungs then just for a relief, I work through the rough times pretty well I think but I have a few seconds sometimes where I think I can't take it I just want it to stop but I always manage through as I know it will always ease and get better. It got better and I had planned to go out to the cinema I got to go I couldn't believe I managed the cinema I have never been with the NIV machine before but it was fine. This has made me so happy and given me so much more confidence to do it again you don't appreciate the small things in life until the become obsticals put in front of you. I had such a great time and for the duration of the movie I felt normal whatever that is. I can't wait to go again soon.

Sunday I woke up feeling really good I felt good breathing wise too which I am always really grateful for as I know I could feel really breathless at any point. I saw my dad which was nice always good to him. Mostly just had a quiet day relaxing with my mum sister Andrew and Oliver again.

Today I am feeling okay had transplant on my mind alot today but I have those kind of days, quite breathless today and slept alot so I think I will try for an early night tonight although I struggle to sleep at night these days.

So hopefully I manage to stay out of hospital for a while as it's Oliver's 1st birthday on Thursday and his little party on Saturday I can't believe he's going to be a year old already it's truly amazing how you can have so much love for one little person he's not even mine and I would do anything for him to protect him.

That's me for now I will update again soon.

Tuesday, 27 August 2013

Some dreams can come true

It's not been that long since I last wrote on this blog but I really felt the need to write about this one. It's all about a dream I had last night, not just any dream but it was so surreal and took dreaming to a whole new level.

It started with a phone call in the early hours my mum answered I could hear the whole conversation even though I am in a different room than her in the house but it's a dream weird things do happen ! So she came running frantically through to my room shouting LUNGS LUNGS LUNGS !! What did I do ?? Rolled over and told her to shut up and go back to bed and stop being silly it wasn't my time for new lungs. Once she reassured me it was a true phone call we were told to wait the ambulance with our already packed bags waiting at the door.

As this was a dream it totally skipped the ambulance journey not to sure why, next thing I knew we were at Newcastle. I was on this little trolley bed thing and was wheeled to theatre immediately. Every time I went to theatre when I was young my dad always used to come into the room where I would get out to sleep as my mum couldn't do it she would get to upset, this was what happened in my dream my mum was crying so my dad took her aside and reassured her he would go in with me and comfort me till I was asleep. I held onto him so tightly it felt so real I was terrified and said numerous times I didn't want to go through with it but they knew that was just fear talking, I put my head on my dads chest and with that I was put to sleep.

The next part of this dream is my favourite I open my eyes and there surrounding me is my whole family about 20 people all around my bed (that won't be allowed when it's really time for transplant for infection reasons) I still have my NIV on but no tubes attached to me. The head surgeon comes in and says the op went exceptionally well and whenever I feel well enough I can go home. I look around this huge room I'm in in the ICU and wonder how I got here I am totally confused but after a while it all sinks in and I start to move I sit up the stand then walk before I know it I'm running down the corridor of the ward. The surgeon spots me and says well you seem much better you can go home when you like.

My mum packs the bags like we have been there for ages, we then head out to the car and head home back up to Scotland. I'm still on the NIV and my sister turns around to me and says are you going to take that off now, I look at her with a look of fear I mean this machine has basically been breathing for me for nearly a year I am quite attached to it, but I knew she was right (in the dream of course haha) she takes my hand and helps me take it off I hold my breath scared that if I try to breathe on my own it won't work, both of us sitting in the back of the car holding our breath then I had no choice I had to breathe so I did and there are no words to explain how amazing it felt to breathe on my own I know it's only a dream but it felt so real and amazing !

Once we got home I ran into the house up and down the stairs about 10 times round and round the living room I just didn't stop I couldn't I wasn't even breathless I honestly felt like I was on top of the world, and that's when it happened that's when I woke up ! Unfortunately it was time to go to the loo.

This has been the best dream I have had in a long time and I am taking it as a sign that I am going to get my new shiny lungs very soon as for now more of these dreams please !