There is way more to me than just a life with Cystic Fibrosis, but its a huge part of my life, it affects everything i can do! Somedays i hate CF others i just get on with it! This is my life, my story, the way i deal with CF and the way it affects me! So read with an open mind, don't judge me or feel sorry for me! i'm stronger than you think and i'll keep fighting till the very end!!
Natalie - Words can't do you justice, but this is my little tribute to you, 5years after you left us.
I've been trying to find the words today to say how much i miss you, but those words just don't even justify what its really like. You were and still are how i like to describe as our CF Princess. People say i'm cute and tiny but that's how i saw you, so cute and fragile i sometimes felt like if i were to hug you too hard i made break you. You were the heart and soul of every gathering, the girl that everyone was amazed by and truely blessed to know. (Trying to write this without crying). Your beautiful blonde hair which was always so perfect, your eyes that dazzled the world and showed you had so much love to give, so much you want to share out with your friends and family and that's why we all loved you so bloody much.
The day you left our world, free from pain and able to breathe was such a tragedy, no one ever expected you to go anywhere, least of all me, i know your fought to be here to the very last breathe and not for one second did you ever want to go. I really hope your safe and well and that u are having a bloody amazing time with ur family and all our CF friends, i hope you don't get told off up there for cross infecting each other. One day i know i'll be with you and you'll keep me safe and we'll be to party like we did here, inject vodka in our tummy tubes n get so drunk till we fall about laughing, cough n probably let out a little dribble of wee. ha ha!!
I'll never forget the night we made you laugh so much you actually did wet yourself and the bed!! ha ha xx
You know there was never anything bad anyone could ever say about you, n thats the truth, it's not what they'll say about me, but u were such an amazing friend i was so lucky to have you. Life with you was just simple, easy you knew me and how i felt and it was just a natural friendship.
I remember when i had just got with Steve and i got booted out the big fancy room so you could have it, i was not happy but then when you rang me and they said u might have that horrible bug that meant i could never see you again i broke down, luckily you didn't and we were soon back to causing trouble on the hospital wards. I loved been in hospital with you, everyday a mini little drama of our troublesome CF lives but everyday a little adventure of the mischief we could get up to, the notes we would send round between in each other in nurses n physio's pockets, the texts we would send when we had little visitors to our rooms and we were up to know good and needed to cover for each other!! Yes u know what i'm talking about Miss Buckley, although i'm def sure i spent more time covering for u, u were a naughty little one!! hee hee! Hey u been gone 5 years now its time to let the little secret out (i can here u screaming at me for that one now as i'm typing). But hey we had fun and we never let been in hospital ruin our fun.
Its 9.30pm and this day is almost over for another year, its not like i don't think of you all time, but this bank hol like every year before i relive every second of what happened. I know everyone else does too, u left a huge whole in everyone hearts that now only filled with memories and sadness that your not here to make more with.
I wanted to write this last night but i wasn't in the right head space, i was tired after that shopping spree tribute day i had with gem and steph for you. I miss how you shopped in the kids section with me! Now its just me running round in the aged 11/12 clothes from new look, kids of got way more fashionable these days u would of loved it and i'm sure you would of loved my discount at accessorize too.
I bet ur pretty busy up in heaven u have so many people to be a guardian angel of, but feel free to come see me, make a noise, knock something off, not anything i have to clean up though, u know i hate cleaning, but i know sometimes i think of you and you make me feel strong, i wish i had you too talk to, i know you probably would of done me a favour and told that silly husband of mine how stupid he been loosing me, he probably would of been quite scared of you (ha ha) xx So cute n tiny but boy you were fiesty, i loved everything about you, u were true, honest and definately spoke your mind. If i can be anything like you as a friend to people i would be so proud. (bloody crying now you softy).
So i guess it's time to put on the song i been hoping to avoid all day. Christ the song kills me, i hate the fact your not here, 5 years on the days get easier, the pain hurts a little less but i still miss you.
Stay safe sweetie, breathe easy every moment of everyday and none of us will ever forget that you were apart of our world.
I love you so much!! :) xxx
Until we meet again, n u had better be there waiting for me, although its gonna be a bloody long wait, cuz i fight for the both of us now!
Ok i'm sitting on my sofa, snuggled under blanket with a cuppa, tissues, paracetamol and the olympics on. I'm so loving the olympics, my favourite sport surprising has been the rowing, i love waking up n flicking it on, not that u ever gonna catch me rowing, one row n my arms would want drop off. Struggling bit this morning, chest feels mega clogged, i''m tired and my head feels little messed up. So when i need to clear my head this is where i come. Once i've cleared my head, i'm gonna go clear my chest big time n then maybe clear up my bedroom, i been a messy pup last few weeks purely because i've not been in much.
I had a brilliant few weeks, i've got a few amazing friends who are keeping me strong and more importantly making me laugh, i honestly don't remember the girl who laughed like this, i have laughed so hard my stomach has hurt tears n i've ended up in huge coughing, n well they say laughter is the best medicine n well u girls u truely are my medicine at the moment. I always thought of my self as the serious kinda friend, the girl who pops round for a cuppa n has a chat n goes again, i think i've always been someone that people can talk to but not someone u'd rely on to cheer u up n make u laugh. One of my friends actually said u can tell the difference in me, i look alot happier lately. N u know what i am. I actually love how no matter what the situation i can always rely on them to find something funny about it and away to make me laugh!
I still have my days when my head screwed n i'm over thinking things way too much! But hey i'm still only human, i wish i could actually just curl up n go sleep sometimes to shut my head down, but i've never been one to sleep in the daytime, not even when i'm ill can i sleep. Instead i just over think n get teary. When i think i bout my marriage n steve i just feel incredibly sad, i had everything i ever wanted once, someone to love me, make me feel safe and make me happy, but we didn't work, in the end i think we actually didn't really have that much in common, maybe we changed too much, we were always happy together but led very separate lives outside the house. He never would spend time with me and my friends and family, so i always saw them alone and when he did, i'd have to drag him n he would be such a miserable arse i'd wish i'd left him at home. N he knows it was true, i don't want that again i want someone who's gonna be proud to go places with me, who will like my friends n who will make an effort to get to know them, i know everyone can't like everyone, trust me there a lot of people in this world who i would struggle to make the effort with but just someone who tries.
I actually feel so much better about the life i had with steve, i know we don't work and i know we happier apart, all i want is us to be friends, still feel like i can text, call and know he's there. Its hard to think of a life with out him in it, but i think i now find i'm actually OK with thinking about a life without him being my husband.
I'm not scared of love, i'm not scared of being hurt, what i am scared of is being on my own forever. What i miss is that feeling of knowing (pause for the tears trickling). "deep breath" What i miss is that feeling of knowing u have someone in ur life u can go home to who loves you no matter what, who when ur feeling happy is happy for you, when ur feeling sad, puts there arms round you and when u feeling so stupidly in love with someone u know they feel that too.
Sometimes i scare myself with how honest i can be writing this blog, it started off as life about my CF, CF used to take over my life and it was all i had to write about. Now my health is so much better, me, the married me, the girl this time last year didn't really have a great life, i'd drag my little ass out of bed feeling horrendous, cough my head off whilst having a huge coughing fit, sit down with breaky n be lucky to make it to work on time, i'd work, coughing, feeling ill n exhausted n then the girls would ask me at end my shift if i was doing anything, n i'd be excited at the thought of going home sitting on sofa with a cuppa n watching tv n going to bed at half 9. It wasn't a life i was ready for, but it was a life that maybe because i was so unhappy i led.
Now well i still have to drag my little arse out of bed (but thats cuz i'm out all time n go bed late), i get up, i do my nebs most days, i have breaky without a nasty coughing fit to exhaust me, n i get ready for work n most days i actually make an effort because i actually have the energy too. I do have a lot more confidence in myself, i still remember where i came from, u know if u went school with me or saw the photos i was an ugly little duckling, n now well i'm a beautiful little swan.
This last week i been feeling bit chesty, sometimes with CF u get that feeling u just need a little boost, for me i think i probably actually need a wee little rest, but i'm loving my life too much for that, but i do know i gotta slow down a little, out on a tuesday night till 4am n then work at 12, joey does need more sleep, although this morning i feel lots better! I was in London for the weekend n went to Thorpe Park with my brother and then we had centre court tickets at Wimbledon for first day of the olympics, we saw Serena Williams n Federer which was brilliant. but the best game for me was was watching the young british girl, the atmosphere was amazing.
I'm going back to london in a few weeks time for my girl Sophie Gannon 1yr transplant party, today 1 year ago her mummy was told there was nothing more they could do, her mum fought for her, n Harefield and an amzing Donor saved her life. Now a year on she's still here, she's amazing and i can't wait too go down and see her again.
Its also a year since i think i actually knew my marriage was over, so i've been dealing with this for a long time. N now i wanna move forward with my life, i feel ready, but i don't ever want to forget the past and i don't wanna cry anymore.
Who knows if i'll ever find someone again, someone who will love me n accept everything about me. But i have a good life now, i have amazing people around me, my friends n family mean the world too me and who really look out for me and i know they'll always be there.
N u know what i feel good now, writing this really helps, so i'm gonna go do my nebs and kick some CF ass today at clinic then meet my lovely sister in law for tea.
I love each n every one of u in my life, i love how special u make me feel and i thank u each n everyday for helping me through my life xxxxx :)
Where the bloody hell as Joey gone, i can't seem to find myself this week, one minute i'm crying, next i'm laughing. I've learn't to cry n pull myself together so know one knows its happened to be honest. I love driving, driving is my time to think and clear my head, lately it's been the thing keeping me sane, i love just getting in the car when im on my own, it's me the open road my tunes and i sing at top of my voice, it's no wonder it's rained all week!! Sorry everyone, but hey i was enjoying myself!! :)
I've not blogged since the skydive, so it's probably why i feel a little bit screwed up at the moment, i used to writing everything down on here and keeping a clear and positive mind about life. This week was my wedding anniversary and my birthday, the first without my husband, the only way i can describe how i feel about it is sadness, i was sad that 3 years ago i was so truely happy, i had the best day of my life and i am sad that we just didn't work.
I still don't really understand how we went wrong, what happened or what changed but i know i fell out of love with him long before we actually split up, i thought that loving him was enough, now i know it wasn't. What if i make the same mistakes again, one day hopefully i'll find love again, i don't wanna be alone, although i do love having my bed to myself, i just miss having someone there to put there arms around me. Part of me will always love him, i'll never forget our life together but i think i'm finally in a place where i can let go of it. My wedding anniversary i cried because, well because i'm human i guess, i know steve won't of cried, christ i would need stick pins in his eyes to make that happen but hey we all deal with shit differently. I've always been lil emotional, i say it like it is, i say it straight down the line, what u see is what u get, n if i cry, well deal with it cuz i'm not gonna change me for no one.
I don't like the person i've been this last week though, Lately i've felt like i've not been in control of my own life, like i've been controlled or been doing stuff to make other people happy and i forgot about myself. I'm the god damn important one in my life and i need to remember my life it's all about me!! May sound a little selfish, but aint we all, i need to surround myself with people who make me happy and i need to do things my way. I got lost and now i've got to find my way back. Tonight i'm hoping getting all this off my chest will help.
Had naughty little lungs tonight, they had a bleed, but it was controlled, coughed up n over, i don't let crap like that stop me, i take the pills n tomorrow i will restart the nebs n i will fix myself, i think its been last few days of me virus just causing me little agro cuz i been stressed n back at work. I had a great 2 weeks off work, although i missed my monsoon girls who really do help to keep me saine, they probably have no idea how much i need them all and love them so much but i do. You'd think that a shop full of 15 girls working together would be a bitchy environment but it's really not, we all have such a good time together and i have the best nights out with them.
We went out a few weeks ago for Sammie's birthday and had a great night, we got 6 bottles of champagne for free cuz i stalked the DJ a little!! :) he was cute though! n then we got another 2 in liquid cuz one of the girls knows the assistant manager, i was out from 8pm and rolled in at 4.30 am. I actually looked at my clock at 10 to 4 and said to Sammie why r we still here!! lol xx We had the best time though and was worth the lil hangover the next day!!
If u were to ask my parents where i been last few weeks, they'd say "out" i had a nasty virus which stopped me in my tracks for a few days at the start of my weeks off but i soon kicked that in to touch and decided i wasn't letting it ruin my time off, i was so impressed after feeling crappy with the virus for two weeks that my lung function still kicked ass, so i was happy girl, lung function was still 46%. So I spent time with friends and had a smile on my face for a few reasons, i was happy, then who knows what happened, monday was my birthday and from the night onwards i've not been the girl that i know n i love. I've felt lost! It's like a little psycho popped out of me and i don't know how to put her away, she freaked me out and scared me and made me act strange. Me the real me is calm and laid back, at moment i feel like i'm living on the shortest fuse! I don't actually recognize myself, i went to sunbed the other day purely to calm myself down. Sunbeds always make me feel happy! :) but i can't afford them each day, although i will be going tomorrow, gotta get tan back i was going pale n looking ill. So if anyone has seen the real me please send her back to me, cuz i miss her.
I'm used to be so together, i keep my cards close to my chest and i'm very careful who i let in and to what part of my life. Everyone knows i talk alot, in fact i get in trouble for talking all time at work. But I judge people on what i think they will understand about me, i'm a complex lil chick n some people, people who i'm really close to just don't get my CF, but that's ok, i'll tell them what they need to know, when they need to know it, there r some people i wouldn't talk to about my relationships because i'd never want them to know, then there are some people i would like to let in and for them to one day know everything, but i'm too scared too, so i just talk random crap and avoid subjects because it just makes life easier.
Maybe it;s because i haven't actually been shopping this week i'm not my happy joey self, maybe thats what i should do tomorrow. As well as sort out my belated birthday nightout for next saturday.
Well im hoping now i've kinda got some crap out my head i'll be able to sleep well tonight and wake up as me again tomorrow!
Love you all n thank u too those who being there for me lately. U know u mean the world to me!! xx
I think i've gone on and on and on about it and if you're friends with me on Facebook you'll prob be relieved that i've finally done my Skydive and i will not be filling your news feed anymore with my Justgiving links (lol).
Lungs are you ready to jump! Yes they were, my two weeks IV's pre the Skydive turned out a top lung function of 1.2 litres FEV1 46%, the highest number i remember in years prob at least 10years, so my lungs seriously kicking some CF but at the moment, it's about time and perfect timing for our big day. The thing i was most worried about was been able to breathe. But i hoped with my lungs been in top condition i'd be ok.
All week i'd be so excited telling everyone i met i was doing a skydive on Saturday, even my lovely friend Sammie who now does my nails had a little Skydive challenge to do, i wanted Skydive nails, lol! N she did them fab, i loved them xx :) She so amazing at doing nails xx
The day started with a 6am alarm call and a very tired Joey crawling out of bed to sit on my little stool, putting my face on and straightening my hair, half asleep! No excitement, no stress just numb! I soon woke up and was ready for 7 to hit the road to Nottingham. Langar Airfield is about 1hr 15 mins from my house and we had to be there by 8.30am to book in. I was there at 8.25 and as i was organising it for 19 other people too, was soon into organisation mode, giving out T.Shirts etc, collecting sponsorship money and telling everyone where they had to go! So i was one of the last people of our group to book in with my mum and Ula. The three of us wanted to dive together.
My next job was to set up my cake stall, i had to call my lovely grandma n grandad into the rescue to run it for me, they had made me 50 little cakes, so had Emma's mum, my mum and Pip. We sold them for 50p a cake! We made £72 on little stall so thanks to everyone who made them and bought them.
I seem to be very lucky with the days i've picked last two years for skydive, beautiful sunshine and everyone had a lovely day sunbathing and chilling whilst waiting for there name to be called and was great for all the people who came to watch too, i told everyone this year to bring deck and camping chairs and blankets and suncream.
What a beautiful week it's been and i'm so glad sunshine lasted over weekend to make another perfect day for skydiving, the wind got a little bit choppy though and they said they might have to cancel late afternoon but luckily we were ok.
I love watching everyone jump and seeing them come down and land then have the biggest smile on there faces, no one can describe the feeling and me i can't describe it either, i just loved every minute of it once i was actually out the plane. i'd spent the whole day organising running around and speaking to everyone the reality that i was actually doing it myself didn't really set in till i started to get changed.
I had such a lovely instructor, i told him i had CF and i was little scared of not being able to breath when i jumped out, he was like thats fine, just stay calm and if u feel urself struggle just shout anything out! it will make ur breathing better.
Before we walked to the plane!! :)
I had paid for the video so i had a camera man with me, so getting on plane we had to keep pausing to give a big wave etc, then on the plane every now in then i'd have a camera in my face, now i know how everyone else around me feels, being camera queen i'm always shoving my camera in peoples faces, hee hee but hey who always has best piccies after a day out, me!!! :) So this guy had better be good, it maybe his day job but camera queen is my title. lol I have watched my video its funny and you can watch it at the end of my blog!! :) Something to look forward to hey after my babbling xx lol
On the plane i start to brick it, reality set in that i was about to really jump out of a plane, my instructor kept running through little things with me, he'd say "what's the position for when we jump out" i'd cross my arms over my chest, and say i had to bend my knees out the plane to try n kick his bum! lol! Then when he taps me on shoulder i can move my arms to freefall position, and landing i had to put my hand under my knees and pull my legs up as high as i could! All sound like simple instructions but i swear no matter how many times they went through them with me, they'd go into my head and out two seconds later.
U can tell from my face on this photo, i'm scared, shitless now!! lol xx But still no questions in my mind, i was going to do it and although i was scared i was also so excited.
At 10,000 ft, we had to put the horrible hat on, really not a fashion accessory, the suit had already turned me into fat little joey! So the hat and delightful goggles i'm sure made my little face a little chunky! :) He ran through everything with me again an told me after singles jumpers we' be first out of the Tandems's! Argh!
In my own head i was like just listen to everything he says and nothing will go wrong, In front of me sat on the plane there were about 4 single divers and couple of camera men, when the doors opened, my instructor said to, right we're first out, lets show your mum and friend we're confident and ready to go! My heart was pounding, i took a few deep breaths n slowed my breathing down. Within the space of about 5 seconds the 4 singles divers walked to the door and just fell out!
Then it was my turn, all that was going round in my head was "oh shit oh shit oh shit, i'm actually gonna jump out of this thing". Next i was hanging out the door, i hoped to be able to turn, wave to mum n Ula and shout love you, but no chance of that, my instructor was sit on the edge of the plane, i was hanging and i mean just hanging between his legs, i tried to give a lil wave to camera man who was standing on the edge holding on to a rail, there wasn't even a 1,2,3 go! We just suddenly went!
Now at this point, me, yes me, is lost for words, there are no words to describe the feeling of freefalling, we were at around 13,000 ft, 2.5 miles i think he said! We freefalled for about 40 seconds, my mouth went so dry and i swear on video i'm like smacking my lips together!! ha ha!! :) I kept wanting to laugh but that impossible when ur cheeks a wobbling, i kept trying to pull my hamster cheek smile but i could close my mouth, ur don't really have much control whilst ur freefalling xx
The camera man was at first freefalling right below me, i kept trying to wave, but my arms were kinda flapping around, then the camera man disappeared, seems he was filming me from above, then suddenly he popped back in front me, then we opened the parachute, that prob the strangest bit, u can get yanked backwards, as we went up abit because the parachute opened, the camera man just dropped to like a dot in front of my eyes, i went to scream "Nnnnnnoooooooo!!!! See him just drop was scary, but i soon forgot about him, we were floating around and the views were amazing. The camera apparently opens his parachute a few thousand feet below so as the parachute don't tangle!
Once we were gliding around my first thoughts were did my mum n Ula jump, i could see my mum, she was actually just below me, and then he twirled me round abit so i could see Ula, she was below me too, even though i jumped first, the weight meant they were below me, so i could see them spinning around and floating and then i watched them land safely all whilst i was still floating around.
He let me hold on to the controls and then we pulled down on one side and was spinning around to left, then pulled the other way and was spinning to the right!! It was ace, i think as i was actually able to scream them i let a few "wwwwooooohhhhhhooooooo's"!
Then it was time for landing, i lifted my legs as high as i could, i've realised for a tiny little one i'n really that flexible, or maybe it was my fat suit or short arms! But landing was fine, landed on my bum, straight away instructor tried get my helmet off, he said the camera man coming , then i scrambled to my feet, and was talking to camera, i told him i wanted get my nails on camera, that Sammie had done me and when we hit the ground he remembered, hee hee!! :) x I've loved my nails all week! They were ace! :)
Then he gathered up parachute and we walked accross the field, i was so excited, he actually asked me what i'd been most worried about, i said in true joey form "shitting myself" lol! Then i explained to poor guy i had been on ivs my bowels were like water and i'd taken 4 lots of diarrhea tablets, he laughed at me and said thank you for taking the tablets, but then told me people had actually wee'd on him before! lol xx
Then i got across to my dad i had some photos taken, i was so excited and happy, it's a feeling i didn't want to go away, Ula was absolutely buzzing, hugging Bones and thanking him, lol and chattering away to everyone n anyone. lol. Mum had to go get suit off cuz her harness was digging in her, she ha been up with the guy i call Banana Man, who actually remembered me from last year, which was nice, considering i didn't jump i just ran around taking photos of everyone! :) xx but he did jump with Steve last time, he was the one guy i didn't wanna go up with cuz he so tall u wouldn't even see me!! ha ha!
All in all it was a fabulous day, the weather was perfect, everyone was able to sunbathe and relax whilst waiting and watching everyone jump! It was a great bunch of people i got together and they put loads effort into fundraising and i've spent yesterday counting up the money so far that people have handed in!
Me my fundraising went absolutely amazing, i was so lucky to such generous friends and family, even people who don't really know me but are friends with me on Facebook. My target started off like everyone else at £400, this a few weeks ago when i really kicked my fundraising into gear, I paid for the full skydive myself and the camera man, so every penny i raise if going to the charity. At the moment my total is sitting at £1182!! Would love to make it to £1200. xx
My justgiving site is still running and if you would like to sponsor me you can online or via text. Simply Text Joey84 followed by £2, £3, £4, £5 or £10 to 70070 or by clicking the following link for my online justgiving page. "Joey's Skydive Justgiving Page"
So here for the big finish of my skydive blog!! For you to all watch my video!!! Argh!!! xxxxxxxx
I've had to upload it to you tube so u can watch it!
I've watched a couple of films today, all with there happy endings all with tears streaming down my face wishing I still had mine. I thought i had it all, i really believed i had all i ever wanted, so why the hell did i stop fighting for it and wanting it. If you read my blog and u can take one think from me and my life at the moment then please never stop showing the person you love how much you love them. I did and that's why i'm in this mess, my heart is all over the place, my head doesn't know what to think anymore and my eyes are sick of water running out of them.
From my facebook it's looks like i'm having the time of my life, i am having a great time, i have some amazing friends and i love spending time with them, these days i hate to stay in, i want to be out all the time. It's nothing to do with living at home with my parents, because they are brilliant with me, don't ask for much just want to know if i'm home for tea or not. Just things have changed and i'm different, not because i'm on my own now but because i actually feel well enough to do these things.
I can't believe the difference in me and how i feel with my naughty little lungs. The last two years from Jan 2010 to Jan 2012 i had 17 iv courses, i only felt well for about week and half post iv's before i'd start on my decline back to needing the iv's again, sometimes only lasting a crappy three weeks. I did nearly all those iv courses at home and it took alot out of me and put a huge strain on my relationship with my husband, he stopped being my husband the person i loved and wanted to do anything with, he became the person i relied on to care for me. I never wanted that and i don't think he was ready for it, so our spark just fizzled out. I wasn't the person he married, it's no wonder we went so wrong.
We stopped making time for each other and even wanting to spend time together, his freedom was his friday nights with mates and weekends on his bike. I would never say no, please don't go out, can you spend some time with me, because i knew he worked all week so hard for us to have our house and life together that his weekends were his time and that it was his escape. Problem was i stopped being a factor in his time, he stopped wanting to spend time with me and i was feeling too sorry for myself to bother, if either of us had any space money we wouldnt spend it on each other, i'd by clothes to cheer me up and the bike would get all his money. I never liked his motorbike, it's no lie, i was always so petrified of something happening to him on it that i didn't want to know anything about his trips to wales or that he got his knee down on the roundabouts. But i guess that wouldn't of mattered, i should of tried harder, because i lost him anyway. His bike still gets to spend time with him and i don't.
I don't regret my life with Steve not for one second and even if i knew what i know now 6 years ago, i would still of married him but i would of made more of an effort to stop this happening to us. We were so happy and i look back and miss how happy we were. I knew for along time things weren't right, but i didn't know how to fix it. I guess i always believed he'd always love me and that would be enough, now i know loving someone isn't enough, because without all the other stuff love just really isn't enough. All i had in my life was CF, it was taking over me and becoming everything, i didn't have anything to talk to him about and he stopped wanting to hear it, he wasn't interested in my life, n we just used to sit there not walking, he kinda decided if he wasn't interested in me, i wasn't in him and i stopped asking how his day was, how work was, i don't think he could be arsed to tell me even if i had of asked. My life at home with him was sat on sofa, same place everyday, tv on, laptop on, facebook. Telling anyone else who'd listen about my life, we'd watch tv together, but we'd never talk about what was on, only thing we'd really chat about was little Soph.
Writing about it makes it sound so sad, we really did waste an amazing relationship and i feel like i've lost my best friend. Now i wanna tell him everything, i want to do everything with him, i wanna be the wife i should of been. But i don't know how to, he ended things and i know he spent along time thinking about how we were just friends living together and he just didn't love me the same. Honestly i didn't love him same either, i walked away knowing we were over and all the reasons why, i didn't fight for him because i didn't see the point. He the kinda person who makes his mind up about something n sticks to it, me i'm an emotional little mess that would cry alot and not really do anything to make changes. That's what i'm doing now, i can't sit still because i think, if i think i cry and i want to do something about it but i don't know what to do, too scared of being rejected i guess. I honesty don't believe we'll ever get back together because i know the man i married. I feel like he gave up on me and didn't give me a chance and now it's all over.
Somedays, weeks i cope quite well, those are days i keep myself so busy i don't have time to think. Those are the days i'm happy, the days you wouldn't know how much i'm hurting inside, those are the days i'm coping well. So its a good job i'm feeling so much better i work that little bit harder to look after myself and having just gone 11 weeks off ivs i'm so pleased with how my health is doing, i've checked back in to Wythenshawe last night for a week or so, to have ivs started and to sort out my sugars and feeds, got to have a synactin test, to see if my body actually still makes any steroid.
It's my skydive two weeks on 26th May, that's why i'm having ivs, to make sure my lungs r best they can be for when i jump out of a plane!! eeeekkkk!! It's come around so fast!! xx I'm still collecting sponsorship on my justgiving site, http://www.justgiving.com/Joanne-Hughes2012 so if you can please sponsor me, every little helps!! :) xxx I can't wait to blog about it and tell you all about it, i just hope i'll be able to put the experience into words.
Sitting here, i'm bored out my brains, tired n having little naps, i don't feel ill, but first few days of drugs always knock ya about abit. Weekend TV is so awful, i can't wait for monday's day time to come back. They letting me have ward leave tomorrow to go Alton Towers with my Monsoon Girlies, i can't wait! xx
I've always been a huge believer in the fact the people you meet online can play a huge part of your life and really become true friends! With Sophie this was definately true!
I met online through Facebook, i'm not sure how we started chatting, but the world of Facebook n Cystic Fibrosis is very different when it comes to adding people, you tend to check out the mutual friends realise they prob have CF and add them.
I can't write about my friendship with Sophie without mentioning one special lady too us both. 4 years ago, there was 3 of us, we used to chat everyday, run messages to try encourage each other to eat, rant about the world of CF and generally have such a laugh! None of us had ever met, I talked to Anna on the phone a couple of times, one day she rang my house phone and scared me, she sounded like darth vadar! ha ha xx Anna loved wagon wheels, rice pudding n chatting online. She touched so many people lives and everyone misses the chats we had with her. Sadly in Nov 09 Anna passed away after what i can only describe as the most traumatic 18 months i've ever known anyone with CF have. My did she battle on though, she fought through everything, but unfortunately a transplant wasn't an option for her and her lungs eventually gave in, but never did Anna, she was such a beautiful person and few weeks before she passed after one of normal three way random conversations Anna decided we were like the three musketeers! However that day she couldn't find a photo of Musketeers instead she found Mermaids, which i always thought fitted us perfectly, mermaids must have amazing lungs to swim around under water all the time! This is the photo she did of the three of us. It's still Anna's profile photo now and I love that.
After Anna passed away, me n Soph became really close and over the last 2 years Soph has become a real rock to me, helping me through things! Soph hasn't had it easy in fact last year she put on transplant list and deteriorated so fast her mum was told there wasn't much more they could do for her, her mum wasn't having that and had her transferred to Harefield Transplant Centre, they put her on Ecmo and used a Novalung to oxygen her blood and kept her alive till her 3rd n lucky call, which came on 20th August. At the time i got the text from Soph mum i was sat in hairdressers in Turkey on my own with no one around me too tell. Soph's mum had been updating me everyday whilst i'd been in turkey. There was something about that day i woke up with a feeling, we were 2 hours ahead in Turkey and at about 11 i said to Steve n Sarah that i had a feeling Sophie was getting new lungs today, n then a few hours later i got text to say soph had gone to theatre. I was on pins all day, till i knew she was out of theatre, we were flying home that evening and i didn't want to get on that plane till i knew she was out of theatre and everything was going ok so far. I got a text bout 20 mins before i got on plane and was so relieved.
One of the things Soph had written on her to do list for after a transplant was "Meet Joey". I decided at beginning of April i was gonna make that wish come true. So i arranged to go down to stay with Soph on Thurs 3rd May and stay till Sunday. I was little nervous about staying so long, what if in real life we didn't get on, or annoyed each other, but we had the weekend planned. A trip to Whipsnade Zoo to see Savannah the Giraffe who Soph had adopted for me as a Christmas present.
I was so excited, Soph too, we were both counting down the days, hours. Soph was working till 6 so i planned to drive and arrive around same time she'd get home. My plan went slightly wrong, just 40 mins away from her house, i got stuck in traffic which extendedmy journey from 3.15 hours to 5 n half. I arrived around half 8. I know it's not like Soph is a stranger to me, we text, we facebook etc but i was a little nervous, but how normal it was, i walked in we had a big hug, sat down and chatted n chatted n chatted. Just like we had known each other for ever and just like always been part of each others lives. Soph's mum Pam made me feel so welcome and even gave up her bed for me, as we had decided not to stay in same room. Thank you Soph's mum for letting me stay and for everything xx :) xxxxx
Me n Soph had a great day at the Zoo, it was a kinda safari park really, u drove round most of it, but could get out the car everywhere to look at animals. Savannah n rest of the Giraffes were inside n the most difficult to take photos of. They were definately the biggest giraffes i've seen, i recon i was size of one of there tails to be honest x lol.
Friday night we went for a trip to the O2 for tea at Frankie and Bennies, we both were nakered after day at the Zoo so hope for pjs and tv was great idea afterwards. Saturday was big day the FA Cup final. We went to Bluewater shopping centre in the morning, we both bought new shoes, n i got a skirt i'd been after in stoke but they didn't have a tiny little 6. I could of bought loads and spent hours there but we both were hungry and wanted a McDonalds so we left, got food and went round to Sophie's dad to eat and see Sophie's aunties who had come down for weekend too. We had a good laugh then went home to get changed. I like dressing up, so even though i'm pure Stoke born n bread, please don't doubt my loyality, i wore Soph's other Chelsea shirt and we went to the pub with her dad to watch the big game!
Luckily they won, we had a couple of drinks, Soph's dad was a little drunk and it was rather funny for me to watch although sure Soph was quite embarrassed. lol. Soph's dad David and his two sisters all sponsored me £5 each for my skydive which was so kind of them, would like to thank them again.
Sunday morning i came home, sadly!! I had such a lovely time and can't wait to come back for Soph's one year celebrating her new lungs party in August. Hopefully we're going to go to Basingstoke at end of July too and meet Kate and go to Anna's hill where Anna's ashes are scattered and we can let of lovely balloons for her.
Thank you Soph for letting me come stay with you, i had such a lovely time. I treasure our friendship and know how lucky we are that we get on so amazing and that we were able to meet. I'm sure Anna was with us all weekend too.
