I pretty much missed August and September due to my naughty lungs and screwed up head. On 2nd August i blogged to say i was off to clinic that day and i knew i was probably gonna need some ivs, i'd had a busy few weeks but i was in for quite a shock when my lung function was pretty low! I spent 19 days in hospital battling with silly lungs that didn't want to get better, then another 9 days ivs at home only to end up with my lung function back where i started. But after 4 weeks ivs they decided i'd had enough and needed to see how i go and so i came home needle free. This was the 30th Aug, by the Sunday i'd started to feeling rubbish again, by the Tuesday i could hardly breathe and the Thursday 6th September i was back in hospital. 14 days later i finally get out and finally feel like my old self, not only had i been battling with my lungs i been battling with my head.
I guess the year of 2012 finally caught up with me and bit me on the ass! I was a complete mess, i cried my way though Aug and Sept, sometimes i'd cry and not even know why i was crying. Crying isn't usually me, i cry when sad things happen, i cry in films but i don't really cry about my life. I tend to just get on with it, each day a new day and i look forward to end of the day and the start of a new one if things haven't gone my way.
I felt like i was constantly balancing on a knife edge, twittering on the brink of tears streaming down my face and my head i just wanted to find an off switch! I was completely unpredictable and had lost my smile. The girl i knew n loved, was gone and i was left with that quivering wreck who i really didn't understand! My safe and happy place my car had become the place i cried the most, i love driving whether its 10 mins down the road or 3 hours to london! My car has always been the place i've done my best thinking, just me the open road, music up, but now it me, open road, music up and tears flowing! It didnt matter what i was thinking about, somehow i'd cry, it didn't matter i was listening too, i'd cry, i had no control over my emotions and felt so sad all of the time! I felt like i was living on a knifes edge, like one person could ask how i was and i'd be fine and the next well i'd be fighting back the tears.
I couldn't even tell you what it was that had made me that way, i've had one hell of a year i guess, but it didn't seem like anything big was upsetting me, it felt like it was loads of little things, people who didn't understand and things and people who were doing things around me which seemed to just become my baggage, my problem and became just one more problem that i couldn't deal with. Major stress that was not only controlling my thoughts but that were controlling my lungs too. My chest just didn't want to behave, lung function up and down, drugs added and taken away. In the end a mini breakdown was probably what i needed, i turned up at clinic in floods of tears with a bag packed and asked for help, this time i think they knew how to help me more. Still to this day i'm not quite sure how i found myself in this place or what changed to make me snap out of it but the second 14 days in hospital for me were like an all round rehab, i fixed my head and fixed my lungs!
So 20th of Sept i came home, feeling like my old but kinda new self, i felt well and strong again, ready to face the world, this time being in hospital instead of just crying i'd talked. Coming home wasn't easy, one of the hardest things i found was staying in and behaving. For the first few days i ran around like a mad hatter as usual seeing all my friends, going back to work. Then i slowed down a bit, found myself a routine with my medication again and started to find my life at home again.
On the 27th Sept, being the little cross infection rebel that i am, finally feeling well enough not to pass anything on, i went to see my friends Em n Az up at the hospital in Stoke. I did my usual trick of staying for a good 6 or 7 hours, i guess when u lived in hospitals all ur life they just feel like home when you get there. It's random what cf's get up to in hospital. Aaron never wanted a cup of tea, so he did the usual ordering tea, 1/4 sugar for me and Emma actually made us both oatcakes for tea! I'm still in shock that emma made us tea. I had seen Az for a good 8 weeks, been so poorly myself, i had to make sure i was feeling good. I'm so glad i got to see him though, to be fair he sat n listened to me n emma talk for the whole time, whilst playing on phone or ipad, u know he was secretly listening, he'd pop up with a lil comment every now n then. I never for one second believed this was the last time i was gonna see him.
Aaron passed away on the following Tuesday 2nd October and right now i'm still stumped for words, in my cf world, he was my everything, he was my brother and right now i can't imagine my life without him. If you know me, you know all about Aaron and everyone around me knew that if this day ever came u'd have to pick me up off the floor. Still nearly a month on i don't know how i get out of bed in the morning, might be because i've had that weird craving for cheese spread on toast with beetroot salad again, yes i'm very weird! Aaron meant the world to me and so many others, personality like no other, cheeky n could get away with murder. When i got the call from Chris (Aaron's dad) i was at home, just about nip out for a sneaky sunbed. I think we all knew it could happened but never expected or wanted it too. I always hoped for a miracle, i longed for a text message telling me they had been able to relist him for a transplant. Aaron had been taken off after becoming really poorly following a bowel blockage, loosing loads of weight and needing blood transfusions. Unfortunately as much as he tried life just wasn't going his way and he never was able to be re-listed and get a chance at a new life with shiny new lungs! That was all i ever wanted, i wanted him to have a life, Independence and to live a life being able to breath!
The night that Aaron died went up to the hospital to see Emma, Aaron was like my little bro and Emma my little sister. I needed to see how she was and i needed to just go and sit with her. I got to the hospital and Emma was sat in waiting area with her mum, Emma been in hospital had been there all day, so brave and in the room when he passed away. I had no idea Aaron was still on the ward, was never the reason i had gone there but everyone kept telling me i needed to go and say goodbye! I was shaking at the thought had never seen someone after they have passed away before. I never went to see Natalie Buckley and i got to hospital 10 mins after Stacey Marsh had died and had chosen not to see them, Emma had seen them both, said to me it was the only way she could really believe they'd gone!
So i grabbed Emma's hand and went into his room! Emma had been in a few times and walked in sat on the bed with him and held his hand, whilst i just collapsed on the sofa sobbing. I remember his mum then told me i had to say goodbye, go hold his hand, give him a kiss or whatever i needed, but just to look at his face n see that little smerk, almost like he wanted it too look like one big joke. It wasn't a joke though, it was real, n he wasn't there anymore. There were no tubes, no ivs, masks or anything, just aaron lay flat on the bed. I walked round and tried to find the strength to sit on the bed. His mum left me n emma to it, and we started talking bout some of the good old days. Eventually i found the strength to sit on the bed, my only words to come out of my mouth were "you little shit, y have u left me?". I couldn't be angry i know he was tired, he'd had enough and he'd done it his way. He'd a rough few days and decided he was ready so had turned his NIV off earlier that day, he went peacefully and in no pain, and sitting there with him, it was strange not seeing the strain of his body just trying to breathe but it was also comforting to see him at peace. I remembering whispering to Emma like i didn't want him to hear me, "asking if he felt cold" she said it was just like he had had the fan on him, so i grabbed his hand. Then i got a little worried, u know we've all seen films when bodies move, well Emma started to say if your still in this room Az listening to us and laughing at us, give us a sign, me suddenly petrified yelped out "but don't u dare move this body" we all knew Aaron the prankster, its the kind of thing he would of done, instead he just timed it perfectly for someone to open the door! I nearly fell off the bed i jumped that much! It was then time to leave, i gave him a kiss and left, was hardest thing ive had to do, but im so glad i did it. When i think of him that night, it doesn't scare me or upset, i know he'd left this place and was free.
I went home that night and slept better than i thought i would, think i was emotionally exhausted, next day i got up and went to work. Although i was completely useless, it was better than been at home on my own. The day before just felt like a dream, i went to work everyday and tried to keep myself busy, denial that it had even happened was alot better than the reality. I was exhausted though on the friday i put myself on oral antibiotics to cover me. On the saturday it was charity day at work, dressing up was last thing i wanted to do but i put my face on and dressed as a bunny.
Sometimes my own strength actually amazes me, however sometimes i just wish that life didn't have to go on, that there was a pause button i could hit whilst i get my head around whats going on! Saturday we had arranged for drinks at the Cherry Tree which was Az's favourite escape from the hospital the pub just down the road, all us CF's have spent alot of time in that pub, so it was perfect place for a cross infection party! We're a pretty big CF family here in stoke, all got to know each other way before the days of cross infection and segregation so it's been possible to stop us been friends. We're a tight bunch and we've lost so many friends along the way! We all grown up together and always been really close bunch so loosing anyone is really hard for us all.
On the Monday morning i woke up and my body couldn't move, a night's sleep and i felt exhausted, so i did the thing i never normally do and rang in sick, i knew my body was telling me to slow down. So i asked for tuesday off too, i really didn't want to end up on iv's again and i knew my little lungs weren't coping brilliant! Dehydrating with all the tears i had cried xx
For all of us loosing Aaron was heartbreaking and on the Tuesday 9th a week later it was 1yr since Nat Sumner had died, so it was a sad day, (My Blog on Nat) so when on the Wednesday morning i got a call to say that Dave Taylor had died, well i couldn't believe it! Two from stoke in a week, both the lads, the lads that used to get up to so much mischief n just were glad to have each other with all these girls around! Dave was 22, i was texting him on the tuesday night talking about him having the bad bleeds he'd been having so for the next morning to get the call to say he had had a massive bleed and had died. It's so tragic, Aaron as horrible as it was too loose him, was so poorly, but Dave saturday he looked so well and happy.
This is the only photo i have of me and dave and it was taken 4 n half years ago at Aaron's 16th Birthday. Knowing that Dave had gone so quick though and looking at Aaron's photo staring back at me, i could here Aaron telling me to make the call. So i did the right thing and rang to get appointment for clinic the next day. I knew now it was iv time, n if i didn't want to end up hospital and wanted to do them at home i had to get sooner rather than later!
My mum came with me to hospital, they could see i was exhausted n agreed iv's to cover me at this time was a good idea! My lung function wasn't too bad considering what i actually thought it would be! My weight how ever was shocking, lost 3kg, n i'd definately lost that in a week! I suddenly felt like skeleton, i could see hip bones, n bones in my hands i never knew were there, it was horrible looking in mirror, i was shocked. I also had a blockage in my bowel, so it was time to bring the feed back, 3kg isn't something i can get back on my own! So i can home with bag full of ivs and nipped to tesco to fill the cupboards full of unhealthy snacks to pile the calories. At the hospital i met the new consultant, Peter he's irish, i'd met him briefly on ward round, he was worried about me having the ivs at home with what i was going through but understood the place i needed to be write now was with my friends and family at home. So it made me all the more determined to kick some CF ass.
Friday night looking and feeling like complete and utter death i went with Ames to join the gym! Its a nice little gym, full of lots of gym freaks but didn't make me feel inadequate! It's not easy for someone like me to go the gym with all these people running on treadmill n lifting weights like they r peas! When there i am getting out of breathe having a little walk on the treadmill. Ames is my perfect gym partner though she makes me feel like i can do anything and confident to just do what i can!
So the Sat night was Sammie's leaving do from Monsoon, i was determined i was going out, so i spent the day on sofa saving the energy, and i did actually make it out, i wanted to be able to dance but my body had different ideas, but i was so glad to be able to go out and as usual was out to final few! I love me monsoon girlies xxx
I love my nights out and i don't let my CF stop me having fun! N for a girl who looked liked death all day on the sofa, my my my i scrubbed up well! Need to get me back on them sunbeds! I proper faded in last few weeks! After this night out i had a week of work, n resting as well as two trips to the gym i was very proud of myself and started to feel really good about myself.
Clinic really good for a change, i'd put 1.5kg and my lung function was highest it had been in months! "Joey finally kicked some CF Ass" i was so proud of myself! That first week of my ivs, looking after myself was a major priority! I'd held myself together all that week, seemed to getting through the days ok and coping way better than i thought i should be! I felt like i was in denial, not believing for a second that any of it at all happened!
To be continued............................