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 !

Pain

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 !!