Tuesday, 2 April 2013

My Fundoplication :)

A few days ago i did a massive update blog, ending with fact i was having an operation on 26th to hopefully help with my reflux!  If you wanna read about the actually op then read my last blog i did a breakdown and put a diagram in my blog before i had the operation, so read this first xxx Massive Update - It's been a while xxx

Basically my operation was to hopefully cure my acid reflux to stop my feed going into my lungs and fingers crossed i'll be able to tolerate feeds better and i'll have healthier lungs! To me my life is all about protecting my lungs and looking after them for as long as i possibly can! I'm not the best with physio and nebs, i do what i need to get by, i try to find a balance between life and treatment, but my feed i was always very religious with and relied on to keep my weight! My feeds don't bother me, i connect up and it goes through whilst i'm asleep, actually part of CF treatment that doesn't take over part of the day!  Before i had the op trying to put the weight on was so difficult, with not tolerating feeds too well and struggling with fortsips, my dietitian said i needed to try eat 3300 calories a day!  I think normally on a good day i only physically eat about 1200-1600 cals.  My feed is 1000 cals in 500mls, so i pretty much needed to get extra 1000 cals in day! I used app on my phone called myfitnesspal, (but u can use it online http://www.myfitnesspal.com/) i love it, u can just scan bar code of everything u eat, change quantity and serving size and it keeps a record on phone of how ur doing!  Makes it a lot easier to keep track of what i'm eating and when i can see at end of day that i only need few hundred cals to meet my targets it spurs me on to go find something to eat!!  

Night before and the morning i pretty chilled bout my op!! Luckily i was first on the list, i kinda expected to be last, cause he was expecting my op to be an awkward one! But he told me he was at his best first thing in the morning so that's definitely when i wanted my op, plus mean't i didn't have to wait around too much!! 

They came down for me bout half 8, i booked in, one of the anesthetic team came to see me and was filling it his forms, i was just chatting to my mum and dad saying i wonder if i could be cheeky and ask them to fix my previous peg hole whilst they were hacking at my stomach! It didn't heal flat, it was like my second belly button but kinda cute!! I didn't hate it, i had no problem with it, but just thought it be nice to have a tiny flat scar instead!!

Never actually got round to ask the surgeon myself, saw him to wave at on corridor on way to the aesthetic room, then i was soon off too sleep, i don't even remember the count backgrounds from 10, i kinda missed the whole feeling of falling asleep, n normally i quite like that bit! Surprised myself how incredibly calm i was, but was also pretty damn proud of myself for i was coping.  As a kid as soon as i put the gown on i'd start being all teary!! This take i think taking off my pretty nail varnish  

So next thing i remember is coming round in recovery, i have pretty high pain threshold, when they they ask me to score things out of 10, ive never really said higher than a 6, n i've had some horrid pains.  Coming round though, i was obviously still in a confused state, but i would definitely say it was a 9! Especially i coughed and the hole in my chest started bleeding n they had to put a pressure dressing on, but they got me some more morphine n pain soon settled.  Then i was moved to HDU n connected up to like a million monitors!

I'm glad i went to HDU the one to one care was brilliant, they looked after me amazingly well and i felt very safe there. The op had taken bout 3hours all had gone really well, i was on recovery for quite a bit and i think i got to HDU about 2ish! They helped me sit up a bit and mum and dad came too me! Bout 4ish the physio's came, i had told her i wanted them to make sure i they got my lungs n me up n about as soon as possible but wow, 4 hours post op, give me a break, but she rolled in with my nebs, pep n acapella.  To be fair though i was just about starting get annoyed by a bit of a tickly cough, so it was good timing.  She was with me for about an hour and helped me finally clear my chest! 

I looked might attractive on HDU, i had told aneathetist he could put in as many lines as he liked once i was asleep, but he had to use my port to put me to sleep!! He must of assumed i was right handed, cuz couldnt see much of my left hand to be honest, had canual, attached to 3 drips and an arterial line in my poor little left hand!! 

Surgeon came to see me about 6pm, before he went home, to check i was ok, which i was, he said i could have some soup if i wanted and porridge in the morning, which quite surprised me, luckily i'd been able to keep my peg and i'd be able to use it in a day or two to feed! Then he said "oh and i fixed up peg hole for u" i had never asked him, but apparently the anesthetist had told him at the end of the op that i'd like it done, so he did it for me!!  For a girl who wasn't quite sure about Mr Galloway at first i was very happy with him in the end, he really made me feel like he cared and that i wasn't just someone he was gonna cut up and be done with.  

My mum and dad left about half 6, not before i sent dad to get my pink pillow, blanket and laptop from my room on cf ward! They nurses said i was definately pimping out HDU, most the other patients weren't able to do anything, these me laptop and phone, sat texting, facebook and then watching Grey's Anatomy on my laptop! 

By 8 my chest was starting to feel crappy again, pretty normal after the aesthetic but with the pain i just needed help, so i asked them to call on call physio for me, lucky for me that night it was one of the guys who works on cf ward, so he really helped me!! The docs also gave me some oro-morph to help control pain better so if i needed to cough i could! Once on HDU i was never in agony or desperate for pain relief, it was just very uncomfortable which ever way i tried to lie, i'd had a few little naps but every time i'd fall asleep i'd wake up needing a wee.  I was that much fluid, i'd got getting in and out of bed down to an art to use the comode, thank god i only needed wee's though! It's weird using the loo, next to ur bed rather than being in a loo! Im bad enough just normally on the ward with a litre of aminophyline going through.  

I had regular pain relief, bloods (from the arterial line) throughout the night, i think i managed a few hours kip on and off.  Worst part was when my potassium levels came back low and instead of putting up another litre of iv stuff, they wanted me to sip a lemon potassium drink, which was horrid, took me bout 45 mins to drink, cuz i could only take tiny sips.  I told her never again, one of the other nurses mentioned it was pretty horrible and there was a cherry one i could have that was only in 30 mls.  Cherry shots, my favourite, didn't quite taste like my favourite cherry corky's or cherry sourz but was so much better than lemon!! The oro-morph was bad enough i'd describe that as a strawberry flavoured sambuca shot! I really missed been able to use my peg and syringe it all in! 

At half 7 i was awake for the day, they do hand over at the end of your bed because it's one to one nursing so i liked been able to be nosey and listen to everything that was been said about me! I pretty much put Grey's Anatomy back on and lay watching that, my physio came bout 9 and then doctors said i could go back to cf ward about 11.  I'd found out there were full graphic photos in my notes of my operation and i wanted to see them, well weird seeing the inside of your stomach, but was pretty damn cool too!  

I finally got back here bout 2, by time they disconnected me from all the tubes.  First thing i did was get my nice comfy pjs on, them gown are so uncomfy and unflattering! They were pretty surprised on the ward with how well i was doing, think they all expected me be zonked for days! I had to stay on o2, just to protect my lungs and so they didn't have work so hard recovering! 

My parents and grandparents came bit later that day, i sent mum and dad to tesco, for custard, rice pudding, strawberry moose's! I'd eaten a yogurt on HDU and that had gone down ok, i tried porridge when i came back to the ward, but i wouldn't advise that, was bit too thick, so for tea the chef on the ward made me some chicken soup.  It was very strange, they fill ur stomach with with loads of gas when they do the operation, you know that feeling u have when u have wind and u drink a hot drink to try move it, well thats kind of what the soup did, but when you can't burp, well, it weird, my stomach was growling away and then it would go to burp but then disappear! I was so bloated i felt like there was two of me in the bed.  I had 5 holes from the actual operation, and one from my old peg that they had fixed.
I managed half a bowl of the soup and a yogurt which i was using to get my creon on, went back to the days of been a baby when emptied creon into yogurts.  Over the next few days i just wandered from loo and back, pain got lots easier, n physios took me on a couple of walks down the ward.  Im not really best lover of soup to be honest and although the soup was nice, it just wasn't soaking up my appetite, to be honest how could it when i wanted a mcdonalds, toast, chicken, chinese and harvester chicken n bacon burger.  So by saturday i tried some mash potato, which i could only eat a few sips of before i was full, i was having a slow feed during the day starting at about 11 till bout 4-5 in evening and it was filling my tummy up too much!  

The chef's on the ward had been brilliant, coming up with ideas, made me some angel delight and tried to think of ideas for my meals, saturday night he said was gonna try chop me some chicken up really tiny, which he did, bless him, must of taken him ages, i was able eat a bit more of the mash with chicken and lots of gravy.  So next day i decided change things round abit, i decided i wanted to see what i could actually eat, so i asked for a mini cottage pie, my fave! They blended the mince a little so it was quite smooth, i didn't start my feed till later that day! I actually managed 2 weetabix with warm milk and then a cottage pie for lunch and same for tea, then i had just 250 mls of my feed after i'd finished eating for the day! My day of eating went so much better and i was able to have all my dressings changed and a nice shower! 

I'm quite bruised, but it will heal and the scars r so tiny, bout cm wide max, it's now a week since my op and i've surprised myself with how well i've done, i think i've surprised the docs too! Reflux wise, soup anything liquid, would always of repeated on me, n nothing, my feed hasn't come back up and when i've injected meds into my peg i've not tasted anything come back up.  So fingers crossed everything has worked really well.  I can walk round, still bit bent over like an old lady but i'll straighten up over next few days.  My food is going down a lot easier and providing i don't get too sick of cottage pie ill be living on that for next few days.  Yesterday i even managed to swallow pills again, 1 at a time, not my usual pop 10 in at a time style but i'll get there.  

Mr Galloway has discharged me now and it's just up to CF team to look after me now, which they doing a pretty good job of.  I've been the guinee pig for this operation for them at Manchester, i'm first CF that had this done pre transplant, so how it helps me and how i recover will be deciding factor to if anyone else gets the operation!  They seem pretty surprised n happy with everything so far, lets just hope my sputum stops looking like feed and i can tolerate my feed without my chest feeling so bad, foods again, being able to eat a curry etc without it repeating on me for hours will be so nice!!

Everyone keeps asking me when i'll be coming home! Well i'm not climbing the walls yet and i know what they like here, once they got you they like to keep you, but i'm not going anywhere till im really ready cuz i wanna go home and be ready to get my life back together not go home, be ill and come back!! My lungs coming thru this pretty well so far, so think i here for at least another week! Luckily i have lots of box sets to keep me busy!! But for now, i couldn't be happier with how things av gone, really thought this was gonna be mega tough, but i'm so much stronger than i ever believed.  

Thank you to the people who have kept me strong, my mum, dad and brother, my amazing friends who've text me 24/7, visited me, sent card n gifts and entertained me!!! U know who r!!! I love you xxxxx :) xxxx  Times like this u really find out who u can rely on!! :) xxxxxxxxxxx

Tuesday, 26 March 2013

Massive update!! :) xx It's been a While xxx

This blog not going to be an easy one to write, i guess that's main reason i haven't blogged since Novemeber last year.  I planned on doing one at end of december, wanted it to be a way of closing a door on the worst year of my life, but there was no closing of that door, the worst year of my life has just continued, but every time something knocks me down, i get right back up.  Today writing this is gonna be my way off loading my life, my troubles and then you'll find me curled up watching greys anatomy series 8 trying to side track myself from the world of hospitals with a good old hospital drama, lol.  It's gonna be a long blog though so u might wanna get urself a cuppa and some biscuits and maybe a tissue as my life really don't get much easier. 

I got thru Christmas ok, it was a really different Christmas  been back home for a start but then my grandma Ethel had had a stroke and was in a home, so wasn't going to be staying at my parents, my others grandparents alternate one year with us in stoke and the other year in Cambridge with my cousins so it was there year down there, it was actually going to be the first Christmas ever it had only been the four of us, me, mum, dad and my brother, five actually can't forget my little Soph! We went and visited my grandma and my auntie and uncle so they day was up and down, wasn't really a Christmas day in front of tv watching i'd planned but i was with my family and that was what mattered.  I worked through the next few days, the weekend before new year was all planned, few nights out with my friends.

It was a bit of a crazy night on my behalf, was pretty ill the next day, however i probably should never of gone out, i wasn't feeling brilliant after going to my favourite steak pub for lunch with Steph and Gem, my stomach felt dodgy from before i went, so i knew it wasn't the food but i wasn't feeling great.  So originally had said i wasn't going out, but then i felt better, dodgy stomach wasn't gonna stop me, so i decided my little body could handle it! My little body had very different ideas, i spent most of saturday, sunday throwing up and having no energy whats so ever, monday night was new years eve, and i had a whole outfit planned for the murder mystery party.  There was no way i was staying at home, so i did my feed slowly all day and managed just about to get myself to the party, drink water and drive home at 12.30.  Having CF makes u pretty strong and its easy to put brave face on things, most people wouldn't of known there was anything wrong with me, the worst thing was that night the stomach cramps had started, i knew i probably shouldn't of gone to the party but having CF makes u wanna live every moment and not miss out.  N even feeling like complete shit i managed to look pretty good, the spray tan helped though!! 

So the murder mystery party was "Wild Wild West" my character was a debutant and so i had found a amazing little outfit for my posh girl going to the saloon for a poker night.  Everyone was dressed up amazingly, i managed the energy to play the game, sipping on my water whilst everyone else is getting piddled.  

 Turns out being sober mean't i was the only one to work out who the murderer actually was! It was actually the person who played my father in the game and i had to blame my daddy for the murder, but no one else realized it was him, just me!! 
My status new years eve, was pretty simple, u don't need a new year to have a fresh start to your life, don't get me wrong, i wanted 1st Jan 2013 to be the beginning of my life just magically coming back together but i knew especially been ill, it just wasn't.  In fact i woke up, first morning of 2013 to be told my grandma had a fall at 7am and my dad had gone to A&E to her.  Seems she'd forgotten that she couldn't walk or stand on her own and either gone to put on light switch or tried to go to the loo, either way she now had a broken hip and would need surgery and a metal plate inserting.  My grandma was 94, she hadn't had an easy few months following the stroke, i knew this was an operation even my 23 yr old healthy brother would struggle with never mind my grandma.  I know it's weird but i hoped she wouldn't get to that, she'd had a funny turn in A&E whilst my dad was with her but they moved her to the ward and settled her down.  That night we had a phone call from the doctors, they had done a brain scan because she had hit her head when she had the fall and she had two bleeds on the brain.  They said to my dad she was stable but that we needed to prepare ourselves, she didn't look like she was going to come back from this.  Me i didn't panic, hardest thing was knowing i was still poorly with my sickness that i couldn't go and see her, but mum and dad said she barely knew that you were there, she had stopped responding and now it was just a waiting game.  She hung on for a few days, but on the friday 4th jan she passed away, in her sleep.  Thing that gave me most comfort was she died on her wedding anniversary and she was finally reunited with my grandad, 24 years after he had died.  Organising the funeral had to be put on hold, because my grandma had a fall they had to do a post mortem and now there is to be an inquest, there was a fair few events that had happened at the care home and whilst my grandma was in Stafford hospital which shouldn't of happened and that led up to the reason why she had the fall.  We are still waiting to hear about the inquest.  

A week after my grandma died, i was still so poorly from the virus, i started to realise i had all the symptoms of noro virus and was totally and utterly exhausted.  I never not go to work,i hate ringing in sick, but i'd had to ring to, my body just didn't want to function and now with been emotionally drained too, i knew at trip to manchester was needed to get home ivs, there was no way i was staying in hospital, i needed to be at home to with my family.  They will brilliant with me at Manchester, my brother had had to drive me, which if u know me proves how ill i had become, i drive myself everywhere!

My grandma and i didn't always see eye to eye, for the one and only reason we were actually pretty similar.  I get my love for shopping and organising from her, to do lists, planning, budgeting.  So it was no surprise that i wanted to be able to plan her funeral, but she'd already done it all for me! 1996 she written a will out, with all the plans for her funeral inside.  To be fair mine is all planned to in my head its just not written down yet, not quite been able to get my head round that bit, i will one day, i've promised my mum, i'll never leave her in a position where she doesn't know what i want.

The Iv's started to kick in pretty fast, thank god, i remember the day after i started my ivs, the Friday, we went to the funeral home to meet the director and to plan everything, my dad took us out for tea, i was sat in the pub with tears trickling down my face because i knew i needed to eat, but i barely had the energy to lift my fork, i've never felt so exhausted in my life, i'd lost 3kg in weight and i'd dropped to 35.4kg which was about 5 and half stone.  Grandma's funeral wasn't till the 25th Jan, it was a long wait to be able to say goodbye, but i think we gave her a good send off that she would of been proud of.  

By 29th it was back to thinking about me, i've been having investigations into my reflux for last few months, if you've been reading my blog for the last year you'll know that when i moved my care to Manchester one of there first observations was that my sputum wasn't the usual colours, infact in looked like feed.  350/400 patients here and i instantly became the girl with funny coloured sputum.  One of my main reasons for moving was because last two years at Stoke i'd had 15 iv courses in space of 2 years, i'd have iv's feel better then after a week and half the ivs would wear off and i'd start to feel like i was drowning in sputum again, but i never felt like i was physically ill enough to warrant all the iv courses i'd had it just seem to be the only answer stoke had.  They decided to stop my feed for a while and it was the first time i went 10 weeks without iv's and i only actually had them because it was pre my sky dive but my lung function was doing amazing too and i was able to keep it up,  Then i started to loose weight, so i had to put the feeds back in, i ended up having ivs in august, september and again in october, so they decided to do more tests.  

I had a pH study done, this involved passing an N.G tube up my nose, which i passed myself, but i had to keep tube down for 24hrs and keep a diary of everything i ate, when i sat, stood or lied down.  

The pH study measured the acidic level of fluid that was coming up into my eosphagus, if you remember the pH table from school, 0 was most acidic, 7 neutral and 14 alkaline, my levels at some points were around 1.3, pretty acidic, its no wonder if fluid ever leaks round my peg it was burning my skin.  I've always been on omprezole this helps to normalize the acidic levels in stomach, so this prevented my oesophogus been too damaged by the actually reflux but didn't prevent the reflux.  An actual period of reflux is if the levels were below 4 for 5 minutes of longer, i had around 100 episodes in the 24 hours, and for my feed the period lasted for 74 minutes.  So overall the tests showed that i did have reflux and it was at at level that may need more attention.  So i was then referred to a surgeon, to see if an operation would help.  He wanted to put a camera down and for me to have gastric emptying tests. 

The gastric emptying test was simple, i had to fast and then go to x-ray, eat some radio active porridge and then lie in a scanner for an hour whilst they watched it move through my stomach and intestines. This test was done to make sure when i ate my stomach was emptying at a normal rate.  Luckily this test was normal.  So next it was the camera down, something if you've ever had done is not pleasant.  Mr surgeon Mr Galloway was doing it, was nice to know he was doing the procedure himself rather than relying on others to report.  They only gave me a wif of sedation, i coughed all the way through, well most people do, but i stayed calm, been the photo queen, i kept hearing him saying, freeze frame and take photo, this was very intriguing to me, i was quite gutted the tv screen was on opposite side to wear i was facing, i kind would of liked to look.  One of first things i did when i got back to the ward was ask to see the photos, it was very strange seeing my peg from the inside.

Mr Galloway came to see me the next morning on the ward, he'd been in the CF Ward meeting and spoke to the team and they had decided if i wanted the operation then it would be beneficial.  Having the camera down had showed that my sphincter (which is the flap that opens to let food in to your stomach) is very weak, therefore the operation would be to strengthen the sphincter, by wrapping part of the top of the stomach round the eosphagus and stitching it in place so that acid can't come go up the eosphagus very easily.  After the operation it will take time for the inflammation to go down and for everything to heal, so i will have to go on a liquid diet for maybe a week then can increase foods to soft foods little by little over the next 4-6 weeks.

For me, feed going in my lungs there was no question, i have to do everything to protect my lungs now for as long as i can.  They said it was an operation that if i was ever to go down transplant line i would definitely need to have one day.  So i decided to go for it, so my mission was to try put as much weight as possible on! He said he was going to have to remove my peg for the operation, so i'd then be without one till things settled down.  So liquid diet, no peg, was gonna be a struggle, i just had to look to the future, in long run it be worth it! 

So my op date came through and it was for 26th March, so i had 6 weeks to get my lungs tip top, get weight on and enjoy myself.  So that's what i did, random nights out, lots of alcohol and lots of fun, but i was sensible too!! I felt really well for those 6 weeks, went to gym, even tried circuit training and actually attended my friend's dance class 2 weeks in a row! 

 Just one thing went really wrong, i'd planned the night out with some friends for my last weekend before my operation.  The biggest party animal Mr Ian Wright was supposed to be coming out with me to celebrate, but sadly something happened, still don't know what but he died saturday morning, his parents found him and we are waiting for the PM results to find out what happened, but he left a huge whole in so many peoples lives, his family and his precious liittle 4yr old boy, he's gonna miss his daddy like crazy.  A week later i'm still struggling to understand, but i tell u one thing, i never thought i'd miss him like i do.  He's been like a big brother to me since i was like 15, popping in and out my life like a yoyo, but normally on a night out up town! Although on my 16th birthday i took him with me to sign the consent form for my belly button piercing, we both had blonde hair n glasses back in them days, we thought we'd pull of been bro and sis easily, they didn't believe us, lucky when they rang my dad he played along with fact he had another son and ian was able to sign the consent.  Lately he's been an amazing friend to me and now i feel lost without him, helped me through some really tough times, n been part of some pretty amazing nights out. I mean who else on a night out can get away with tying a belt round ya neck and making u pose for a photo!!! haha!!! 

Ian was such a wicked guy, dazzling personality, full of wit and bags of charm, always straight to the point, but a guy with a gold heart, would do anything for you and was always at the other end of the phone ready to help u out of the daft dilemma u found urself in! He kept saying he was gonna come take me for lunch whilst i was in hospital this time, i said if you come after my operation then u can only take me liquid lunch, he kept saying he'd take me the pub then for a guiness "liquid n lots of calories" that was his reason!!! Me i don't like guiness would probably rather drink a fortisip!! xx

So now i'm sat in hospital and my operation is in 8 hours time, i'm not still awake because i'm nervous, its just a case of in this place u sit around all day and don't do anything so u just don't really feel tired.  I've just had my final meal, tea, toast n rice krispies, as of tomorrow its feeds n liquids only till i can progress onto a soft food diet. As long as i can sip tea i'll be fine! 

I've been on iv's for last few weeks, n my lungs, well my lungs are in best condition they been for about 10 years, today my lung function was 49% FEV1 1.3litres FVC 69% 2.15 litres, numbers i never really believed i could hit ever again! I was so excited that i cried.  I've been feeling pretty well with my lungs since my last lot of ivs in Jan, but its been a vicious circle with my feed, making my lungs feel terrible and me not been able to tolerate the feed well, once i get on iv's and my lungs dry up, i can tolerate my feed alot better and my lungs feel loads better. but hopefully after the op once things heal, i'll be able tolerate my feed without it making my lungs feel like shit and maintain a nice healthy weight! The surgeon is going to try do it now without removing my peg and if he has to he is going to put me a new one in, so fingers crossed that means i'm not gonna loose too much weight!! 

Gonna finish this blog now and i'll update u all post op in a few days!! xxx

Thanks for reading xxx 

Tuesday, 27 November 2012

Sometimes i wonder how i get out of bed each day!

Someday's i honestly wonder how i have the strength to get out of bed, someday's i'm so tired of being so strong i just wanna hide away. Don't get me wrong i still have a few days where i spend most of it in bed, but they are more like lazy days watching TV or something, rather than me physically or emotionally not getting out of bed! 

People tell me they think i'm amazing and how they wouldn't be coping half as well as what i have with the last year or just generally my life, but i guess everyone finds away to cope.  Some turn to drink, drugs and not ways i would ever advocate but i guess its there way of dealing with it.  Me i guess i use distraction therapy, try my best not to think and keep as busy as i can.  Which is easier said than done, one little bit of time to think and i could cry! Crying doesn't make me weak, i know that for sure, cuz i know i'm a tough little cookie, but i've always been emotional! Although these days the things i would of blubbed my heart out too i'm like ice queen, ball of steal and filling up but no tears! I don't cry at the usual things i used to, the soaps, soppy films etc, now i'm actually crying for me n real life, sometimes it really does get a little too much for me and i find myself in daft situation trying to fight back the tears, swallowing the lump in the back of my throat and trying to find a smile to put on my face! I'm getting pretty damn good at pulling myself together , this yr especially i've had to do it so many times!  

Everytime i think things are settling down, that i feel like i'm getting back on track, bang! My happy places become sad places, people i cared about being hurt and feeling pain beyond belief, people becoming ill n generally people just not been who i thought they were, as well as some people leaving my life all together through no choice of there own.  It's a cruel and wicked world we live in and i just wish it would all calm down and give not just me but the people i love and care about a break!!

Life's hard and things are sent to test us, i'd like to think i've passed the test this year with flying colours and there is a huge prize on it's way too me, big win on lottery would do nicely me thinks! N yes, i do actually do lottery every week and now pay by direct debit so i don't forget! I love to daydream about what i'd do if i won lottery! Weird thing is i don't really know what i'd do for myself, you see for most the world their oyster, for me it's not! Lungs keep my feet flat on the floor and stop me dreaming of an amazing jet set life style.  I always think about how i'd help my friends, set them up with houses, business and i'd just be silent partner.  Little like Alan Sugar, with all his apprentices, well i'd just have my friends running business's of there dreams and mine!! I'd obviously make sure my family were looked after and that there dreams came true and i would have a few holidays, maybe hire myself a cf nurse to just look after me, ivs when needed, port flushes and then maybe i could live the jet set life style. Sooooooo lost in my thoughts of winning right now! ha ha!!

I guess as much as i think i've had enough right now, there is always someone else worse off, friends fighting for their lives, CF can be such a bitch and people in general just having a shit time with life.  I said the other night on my facebook status that life is a game, it's true, from day u born to day u die, your just gotta play.  We don't win all the time, sometimes we play the best innings we can and still come out a loser, but as long as we get back up and play again, we're still living and thats what matters.  It's how we choose to play the games.  

Now i know everyone not born with the inner strength to fight like cf's have, some people i do find frustrating, i'm not saying there weak but they just don't seem to have a very strong outlook on the world, little things n its all over, people who's facebook status's are full of them winging there bags off everyday about nothing! dying because they sneezed, broke a nail or just tired! To those people i'd love to say "come live my life for a day" come breathe with my battered lungs, come walk in my kids shoes, come eat with my rotten digestive system, just come be me! You'd so go back to your old life thinking how amazing you have it! I have people that i look up to, people who fight every day people who's lives i dread to think might be my reality one day, they are my inspiration to get up, fight and not to winge my bag off! Although sometimes i think i'm allowed a little winge, even if it is about the wingers on my newsfeed.  

So this one i'm gonna throw back to you, what makes u get up in the morning! Other than your job and fact u need money that is! But what really makes u get up, keep fighting and living on!

I say it's for the people you love and care about.  That's why i get up! That's why i stay strong and that why i keep on fighting everyday.  Yes, i'm sick of all the crap that comes along each day and quite frankly would love a break but it won't stop me getting out of bed tomorrow, or the next day or the day after that.  

I leave u with this quote i found, which makes me feel quite sad! There is always someone who loves, u, needs you and who's life is so much better because your in it!!! 

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

Monday, 29 October 2012

My World Falls Apart.........

I haven't written a blog since the end of August, to be fair i have started so many times but i have never quite finished what i was writing, i've got distracted, lost my way or not really been able to honestly say what's really going on so i've been dancing round a subject and not being able to write honestly.  As you know the most important thing to me about this blog is to be true to myself.

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............................