Friday, 9 November 2012

Pulling myself back together......

So this blog continues on from My world falls apart!! so you prob should read this first.

I pretty much knew i was in denial and i was kind of sitting around waiting to allow myself to fall apart on the 25th for Aaron's funeral! To be fair as soon as the monday of that week came i started to fall apart! I think like everyone around me we just didn't want the day to come, no one wanted to say the final goodbye! 

If you've ever been to a CF funeral you'll know they are just like no other, the amount of people who turn up, nurses, doctors, friends, families.  Aaron's was to be like no other, he had touched so many lives and i knew it was just one of those times when everyone was going to turn up.  It's true what they say that sometimes you only see people at weddings and funerals, CF funerals in Stoke just seem like one big reunion. For me actually making it to  28, i've lost a lot of friends, all people who had made such a huge impact on my life.  Donna Hackney, Jeni Corne, Nat Sumner, Stacey Marsh and Natalie Buckley, photos below.

I've also been to CF funerals of Brian, Lisa, Charlotte.  When Carrie died i was unable to go the funeral because i came home from my holiday that day.  When Anna died i wasn't able to go, but one day i plan to go with Soph to the hill where her ashes were scattered and play a game of monopoly and eat wagon wheels. Having been to so many funerals i know how i react now, the hardest part and the most real part is when i see the coffin but there nothing i can do to prepare myself for it!

At the funeral there was a little reserved area at the front for CF's so we could all sit n cough and cross infect together! ha ha!! I was sat with Emma one side and my friend Steph the other side.  I swear through the whole service those two held me up, i was a mess, but luckily i had found the best waterproof mascara, it had been tried and tested in the few days before and it actually worked.  So at least i knew i wasn't going to look like i'd dressed for halloween early on the way out the church. 

My mum and brother came to the service too, they didn't sit with me at the front, which to be fair i was relieved of.  Every CF parent in that room would of not only been thinking about Aaron through that service would of also thought about loosing there own child.  I knew my mum and brother had been thinking about me and i knew it just made them worry about me more.  I needed to be able to fall apart and just think about Aaron and not worry about someone else thinking about me.  The service broke my heart, it was lovely though, was all about Aaron and the perfect send off for him! 

He came in to "Katy Perry - Firework", this song as been haunting me ever since, its on the radio and was on in Walkabout last weekend and then Sat night on X Factor!, its prob gonna be played a lot more over next few days with bonfire night! Then half way through the service "Robbie Williams - Angels" Aaron wanted people to get out there phones and wave them in the air, Emma made me chuckle quickly downloading the torch app to her iphone, i got up my facebook profile pic of me and him, people were singing and stood up in his honour.  It was so hard to wave my arms, i really wanted to, i wanted to sing along too, but my body just wanted to collapse to the floor, i felt broken, exhausted and i was sobbing.  I was pretty much like this all way through the service, i think i'd held it together far too well and this way only way i could deal with it! 

U may think i'm a little strange for this one, but for some reason i kept looking up to the front on the church to the window ledge on the left, n imagining Aaron sat there watching everyone, he would of had amazing view, kept catching myself looking up there n kinda flashing a little smile up there.  I also think in the week of two before he been driving my car a little, wipers n lights coming on, in daylight n sunshine and the car kept accelerating when my foot wasn't really pressing on it! I know if he was trying to tell me he been around he'd prob play with my car.  He did always have something to say about my amazing driving skills! 

As Aaron left the church they played "Faith Hill - There You'll Be" which was perfect, again that was me blubbing away and leaving the church i must of hugged so many people and cried on so many shoulders.  We then went to the Crem where there was a small service and  it was like a final goodbye as "R Kelly - The World's Greatest" was played we all left walking past Aaron and saying our final goodbye, i'd been able hold it together in the service this time, but this i knew was the end and the tears started flowing again! As i walked past i put down my rose and put my hand on the coffin and told just said "love you forever".  Still the thought i've actually had to say goodbye hurts, its so much easier to just think of him been in hospital plodding along, telling us all he's ok when we know he really isn't but having to believe him so that you can actually leave his room and carry on with ur own normal life until u have the time to go and see him again.  

When i nipped up to that hospital to visit Az, it was never i'll just go for half an hour, or even an hour, you were talking 4-6 if not longer.  Sometimes you'd just sit, no talking, other times u'd have such a laugh that the whole cross infection rules would fly out the window as your sides started to hurt, eyes started to run and lungs started to cough.  I'm really gonna miss them visits to the hospital.  It was hard enough when Nat Buckley died going back on to ward 117 remembering all the mischief we used to get up too, but it wasn't long before we were moved to 79, then when Nat Sumner died, i needed to be admitted and had to go in her room a week or so after she had passed away, but the thing that kept me strong was knowing that Aaron was just down the corridor, then it was only a few months later that we moved to the new ward 233.  From when we moved to 233 Aaron was pretty much a permanent fixture, room 12 then moving to room 1 the big massive room where he became Lord of the Manner, signs outside his room saying "Lord Aaron Hall" and having a huge TV bought for him by the staff so he could watch Euro 2012.  He had every single person on that ward wrapped round his fingers, what Aaron wanted Aaron got, that cheeky little smile worked on everyone.  

His wake was at the Florence Working Mens Club in Lightwood, the place we had all been for Aaron's 16th, 18th and for a our charity motown and abba nights.
Alot of great memories with Aaron, it was hard walking in there knowing he wasn't gonna be there, in his dashing suit, after all he had said he wanted a party! So party we did.  We began with Cha Cha Slide, then the cheesy songs just kept on flowing. 5,6,7,8, Tragedy, Saturday Night, Hey Macerena.  I'm sure you get it by now, all the ones with cheesy dances, make u look like an idiot but u secretly love.  Well i do and you know i'm the queen of cheesey music! Me and my lungs surprised myself for bout 2hrs i was on that dance floor, dancing away knowing it was what Az wanted, but also just for a little bit forgetting the reason we were there. They ended things around half 8, we all stood in a circle holding hands to Angels singing our heads off and few tears streaming as we gave our final little tribute to the boy of the day.

As much as the day was horrible it was also a relief to be over, i'm dreaded that day, it broke my heart but i knew it was the day to let it all become real to me and now to start believing he is free from pain and breathing and having a party with all my friends up there on the clouds.

Come Friday i had to pull myself together again, busy weekend ahead. starting with work and a night out with my friends, it was probably the distraction i needed knowing Tues i had Dave's funeral to get through, n well it's ur friends and family who get you through these sad times.  
We went out for leaving for for couple of lads who gone to Australia for the year, right now thats something i'm well jealous of.  I would love to just get away, try something new, i just know that not a reality i have at the moment.  As much as i am trying to live my life to full, there certain limits, but i'm working on improving my health a little and really trying with all my medication these days to stay in a good routine and behave so i can keep myself well, i have been going thr gym twice a week with Ames and i'm pushing myself a little bit more each time.  When i'm in hospital i normally just do 15-20 mins on treadmill at a slow walking pace, i think 3.7 is highest they let me go too, but i'm been starting around 3.5 and getting up to 5.0 on a good day for 20 mins, then i've been going on exercise bike or 15, but it's one with a seat like a chair so as much as exercises me legs i actually feel like im chilling at same time.  Lately i've even tried adding in just a couple of mins on cross trainer, although that really does wear me out so same that for the end.  

Then sat me and Yas went an freezed our asses off at the Stoke v Sunderland game.  Was so cold.  I do love going the football and watching it, living in house with my dad and bro where football is priority of conversation and the TV i guess it was always like it or lump it.  Lucky i like it then, i'm proper little saddo sometimes with me sky sports app checking the scores when i'm out with friends.  Just love how we been meaning go watch a game for month or two and one we go is the coldest day of year so far!!  Was fun though, little distracting from the game when Owen was warming up in front of us. Ha ha.

That night me and my bro went to Michael McIntyre at Manchester, he was so funny, really does naturally make me laugh.  I had originally bought the tickets for me and Steve but my bro was perfect replacement.  The tickets had gone on sale 18 months ago and Michael did actually apologise for them been on sale so early, he then made a joke out of all the people who were probably there that night with a different person who they had originally bought the tickets for. Ha ha!! Thanks for that one.  Had a really good night though! Then i drove to the girls Halloween party at Carla's for a few hours.  Sunday was a well deserved stay in bed. watch the F1 and Football day and monday i just chilled out.  I had a week off work so it was good timing really to finish my last few days iv's and to have a rest.

Dave's parents and girlfriend had been at Aaron's funeral, so brave and Aaron's family were at Dave's. was heartbreaking so for them i have no idea.  I don't whether its lucky or unlucky to have time to plan what you want.  Aaron had written down most of what he wanted back in  2010 when life had started to change for him.  Dave however probably like me, it crossed his mind when we loose a friend, but never actually do anything about it.  Dave's mum and dad didn't know what he wanted so between them and Becky they had to do what they thought.  It was a lovely service, the first song as Dave came in was "Westlife - I'll See You Again" and then up to crem, where they played "Celine Dion - My Heart Will Go on" and "Jessica Andrews - You Will Never Be Forgotten", a beautiful song that i'd never heard before.  I went to service with Emma, my parents and Chris, Kierran and Angelina.  It was another hard day but held together by the people who love and care for me.  Again the church was like a mini reunion of nurses, CF's and friends.  There really should be better times for us all to meet up.  

Dave's parents not really knowing what he wanted, has made me think alot more about trying to find the strength to write it all down exactly what i want.  I always thought there would be a right time, in my head there are things i'm really set on, things that will be really important to me, so it's something i really need to do.  Not that i'm planning on going anywhere, but i want my family to know exactly what i want and for as easy as it can be for when that time in the very very very distant future comes.  I knowing loosing me is gonna be hard enough to deal with, i just want it all to be ready for them.  I've always wanted to write letters to people, to have a chance to say goodbye and to have a box of stuff prepared.  I hope i get the time and strength to write them for the people who mean the world to me! x

One of my most precious memories in my life was the day a week or so after Anna had died, receiving an envelope in the post and as i turned it over to open, written on the back "guess who" with a smiley face, i slumped to my stairs and sat and read the letter off the girl, i'd never actually met but who in the two years i'd known through facebook, messaging every day, chatting about absolutely everything and spoke to once on phone where she actually scared me because she sounded like "darth vader". Anna had faced the toughest fight ever with CF, she had been so poorly, ventilated 3 or 4 times over the last year of her life but each time came back fighting, sending that little text to my phone saying "hi" knowing she was back.  The girl who called me, her and Soph the 3 musketeers one day but couldn't find photos of musketeers so decided we were mermaids because they must have great lungs been able to swim under water and then girl who put our three faces on mermaids when bored in hospital one day. A friendship i will truely treasure for ever. 
I guess planning your own funeral isn't what normal people think of, but growing up with a terminal disease kinda changes the goal posts a little, knowing your not gonna be 90, sitting in a home, staring at the TV not quite with it, not knowing what day it and loosing ur mind slowly isn't my reality.  But i'll be damned if i ever give up fighting to get as close to 90 as possibly can.

Thursday at Clinic went well, looking after myself and my iv's seemed to be going well at the moment.  Lung Function was still 42% and weight still slowly going back up just another kg and i'll be happy.  My reflux is still a huge problem and they referring me to a surgeon now to discuss my options, its starting me become a real problem for me. My exercise tolerance test showed a good increase from when i first moved to Manchester  the times was about the same, having just finished 2 n half weeks of ivs and lung function been in low 40's.  So all in all a good clinic for a change.  So now to keep it up there.  IV's finished so it's down to me to keep up with the treatments and stay in my routine with my nebs etc to keep my lungs working and to keep up the gym.  I do actually enjoy going, get to see my best friend and perve on men for 45 mins twice a week, ha ha!! oh yes and the exercise! lol. 

Friday i met Karen on services for a very expensive lunch and to give her her birthday presents, then it was girls night in, with Bec, Ames, Gem and Carla rewinding 10 years to night in watching chick flicks, Romy and Michelle High School Reunion and The Craft! Then Saturday little shopping trip with Steph and Gem and Cuppa with Yaz and quiet night in.  Sunday F1 and Football before taking little Sophie dog to Steve's parents for a little holiday whilst my parents have the garden paving redone and a night at Alton Towers for the 
Fireworks which are still the best ever and i love going on the rides in the dark.  The Fireworks were a nice end to my week off and my time of resting and thinking about the hardest October of my life.   
This week it's been back to work, the gym and back to reality i guess, carvery with the girls wed night and i started to think about the day it's impossible to avoid Christmas.  You see for me it's the build up to Christmas that I love.  It's the planning, shopping that makes me feel christmasy.  I'm not really sure how i feel about Christmas this year, after this last month it would be enough to make most people not want to think about Christmas, but this year i don't have my husband and my house.  I love decorating, although i normally have to Gem or my mum round to help me decorate the tree.  So this year i'm really gonna miss having my own house.  But the shopping i love, n i'm getting all organised now, wrap, bows n cards bought this week.  Christmas budget sorted and a cute little christmas note book from card factory 99p in handbag ready for lots of to do lists, planning n presents.  Gotta love a cute notebook!
So i guess christmas, looking after myself, work, friends and family are a good distraction right now. Life goes on and we all have to just find a way to get up in the mornings, keep fighting and live each day as it comes.  For me at the moment some of those days come easier than others, but i'm getting through them and have some amazing people around me to help me.  

Thank you for all ur support, love n friendship xxx Love you all xxx


  1. Love you but you have got me in trouble with Matt. I do not perve on the boys at the gym.............................much! lol Ames xxxx

  2. As always Jo you've written straight from the heart and having been through a lot of these experiences myself ie losing CF friends, I know exactly where you're coming from. But life is what you make it and I think all of us with cf have some kind of super power in that our determination to fight/cope/live/survive CF is unbelievable. You are a little fighter, you will survive, sadly we have chosen the path with lots of little road humps- hurdles to overcome be them health issues, personal issues or work issues...... But wel'll get there.
    You take good care of yourself
    Sending big infection free hugs
    Ps I've just had surgery for acid reflux if you want to PM me- feel free xx

    1. Hey hun xx thanks for the message, its hard but like all us cf's guess we just have to take it one day at a time! yeah def do with a chat about the acid reflux surgery! facebook me!!! xx hope ur well xx love xxxx