Monday, 26 March 2012

Kinda Up, Kinda down, Oh Who Knows How I Feel!

Being feeling little down last few days, the kinda down when you don't really understand yourself and what you want. You think you want to be alone and not really do anything, but you feel bored and lonely at the same time.  Yesterday it was a lovely day, i should of been sat in the garden, chilling reading a book or something but no i sat in my pjs, watched the Grand Prix (i'm a big fan) n kinda felt a little bit sorry for myself.  Then my friend Ula rang, she asked if she could just come round, bring a book n sit with me cuz she needed a lil company, i said yes of course you can, but u can leave ur book at home cuz we'll sit n have a good talk.  I had a shower n made myself look human n we went the pub for a drinky, with Steph too, was just what i needed really some girl time.  :) xx

It wasn't really yesterday I was feeling like that, i been feeling like this for about a week, up n down, like i'm not really unhappy but i'm just a little sad n don't know what to do with myself! Today though i'm little happier, work was good, the boss is off for a week, that's always a bonus.  So was a nice chilled shift with the lovely girls who are my friends.  I do love the "monsoon massive" yes we're a little sad with our name, but who care's, we a great bunch n i love them all.  Had a great night out with them all last week for Rachie's Birthday!!


I love nights out with them, always have a great time n some cheesy music to dance around too, i don't know where i found my energy from when i went out, must of been the Jager Shot i bought for me n Rach, after that i was jumping around n dancing round, coughing but loving every minute.  Last year at the Christmas party i just sat down, n same for night in Stafford in Jan i didn't have the energy to dance much at all, so things must still be good for me! Just gotta keep my lungs working and rest enough to make sure i have enough energy to carry on enjoying myself.

I been getting bit lazy with my treatment lately, only been having my meropenim once a day instead of twice, but it's something i'm working on,, today Monday starts a new week and i did it this morning before work, so i'll do it tonight before bed again.  I'm gonna try and be a good girl this week.  It's still weird not doing my feed, i'm worried about loosing weight and still haven't found my scales, so i don't know my weight, really need to have a good hunt! They definately left my house n came with me because it was one of the first things Steve noticed had gone, that n the air freshner, well i wasn't gonna leave it, it's limited edition apple one, only comes out a christmas, i bought a few too last me!! lol xxx

So i've been using this App on me iphone called MyfitnessPal, it's really good, u can use it online to Calorie Count, www.myfitnesspal.com/.  I literally just type in all my foods for the day its really good, i can log in online too and print it out, so it'll make doing my food diary for clinic next time easier, i always have my phone on me so it's easiest way to record my food.  It's a brill little App though, you should try it, even if u only use it for a few weeks, it teaches you about calorie content of food and how much you need to eat.

I'm not doing the best, im barely hitting 1600 calories a day and that's my target, i need to ring dietitian really to ask her what my target should be, thats a target the app has set me but obviously it doesn't know i have CF, i put in my target weight. I can change the amount of calories i need to eat though on the App, i'm gonna struggle if i actually need to be eating more then i'm gonna be trouble. I really want to survive without my feed as i really do think i was having trouble with it going in my lungs and my sputum has stayed kinda normal, no longer so thick n milky and looking like a blob of feed.  I'm also not coughing as much which is good, when i feel need to i do bit extra physio but it's good at moment i feel quite good still.  N it still surprise me how different i feel, even with everything going on, i've managed to stay well, i'm sure this wouldn't of happened if my care was still at Stoke.

I do worry for my friends at Stoke, things are going to change for them in so many ways, the CF Nurse has handed in her resignation and they interviewing for a new one soon and the physio is leaving in May to go on maternity, i've also heard the consultant is moving on and the paeds consutlant who is the Director of CF Service is retiring.  Not a good few months ahead and a lot of changes will happen.  Just hope that who ever comes in their places comes with fighting spirit to fight for what the patients need.  I just hope this doesn't affect the care anymore than what it's like now, although it will take time for everyone to adapt to the changes.

For me the best thing about moving my care was meeting new faces and having new people with a new perspective on my lungs and how to treat them, maybe fresh faces and fresh eyes will help my friends at Stoke too.

Me i just gotta keep plodding along, roll with the times n keep making sure i look after me now! I've spent a long time trying to put everyone else in my life first n now i need to just look after me! Do what i need to do, i treated myself to a new necklace today, one i can wear everyday, i used to wear a butterfly that i bought myself in a shop for Steve to get me for christmas year or two ago.  If i ever find a new man, i'd like one that go shopping n knows me n can pick out something cute n pretty for me, Steve forgot how to do this!  I'd picked all my own presents out, today's present to my lovely self is a little sparkly heart, to remind me that loving myself is the most important thing right now.  Its a present from the old me to the new me to try help me on my journey to find me!

I also bought a new maxi dress for work and a cute high waisted skirt from the kids section in Monsoon n a little white top, i surprised myself with my tininess, the 10-12 looked massive in the skirt, so i picked up the size lower thinking it was 8-9 tried it on, it fitted fine, oh dear! Got it home n showed my mum it's actually 6-8, wow!! Honestly though i don't really need a bigger size, so i'm today fitting in clothes that would fit a 6year old n i'm 27!! Maybe i do need to find them scales fast to see if i actually have lost weight!! xx Crap! n maybe i should get the slightly bigger size! Some other selfish child must of had the 8-10.  God damn these parents who buy clothes for their kids!!

I think i've pretty much updated u now, don't worry i'm still doing well, just few up n down moments which i guess makes me kinda human!

Love to you all n thanks for reading!! :) xxxx


Thursday, 22 March 2012

Pretty Photos :)







 Just thought i'd share a few photos of me that my parents took of me on Tuesday night at there photography class, i was well nervous and so could of done with a bottle of wine first! 

I wrote a pretty in depth heart to heart this morning so thought i'd treat u tonight to some easy reading xx  

Thank you so much for reading my blogs people xxx Love you all!! :) xxxxxxxxxxxxxxx

Lacking Support and Motivation

It's really hard to keep your self motivated when you the people around you don't seem that bothered about what you do! I'm really struggling at the moment, to find a reason why i'm still doing what i'm doing! Do the CF Patients really want a dedicated unit at the hospital or is it just me and Chris Hall that want it.  Are they happy with what they've got, from the moment we started the fight it was Chris and myself heading the campaign, it's been going on for 9 months now, is it just that people are bored of it!! We always knew it was going to be a long and frustrating fight but for me it is something i believed in.  However I decided to jump ship and move my care because i was really unhappy, i couldn't go on living with the frustrations that came with the CF team and the ward and decided i have to look after number 1.

It was never going to be an easy fight to win, we're really up against with the hospital officials saying a small 6 bedded unit just isn't viable.  But what frustrates me is other hospital can do it, i've been there, i've seen them and they work.  Even at Wythenshawe with there high ratio of 350+ patients to 22 beds if beds are free then they help by filling the beds with other respiratory patients, that's how i managed to "pull" a chav with a chest drain after not having a shower for 5 days!! God i'm good!! If only my husband realised what a catch i am, hey! If i can pull a chav at my worst, at my best, the world is my oyster! :) xx

Sorry that went completely off the subject, hee hee! I know that it took other centres a few years off fighting before they got there unit so i never got into this thinking it would happen over night. That's why we doing everything we can to raise money, because if they ever do say we can have a unit, we gonna need funds.  That's what i love about the campaign, the fundraising, arranging the skydive and the pub crawls last year was brilliant, i loved it, really felt like i started to make a difference and this year i'm arranging the Skydive again, Check out my Skydive Blog.  All of the money we raise goes to a ring fenced account with Breath of Life and can only be accessed with permission from myself or Chris.  The intention of raising of the money is for a CF Unit but if a unit isn't achieved the money will be used locally to improve facilities and lives of CF patients. I wish i could get a job fundraising, however i know from working at Caudwell Children that the targets and the pressures put on people is ridiculous, i know not all charities are run like that, but the intensity of the job is too much.

So many people at the hospital believed i'd soon come running back to Stoke for my care, that the grass wouldn't be greener on the other side and i'm sure the CF team believed they were doing a good job at looking after me.  They weren't, they aren't looking after my friends, there are so many more drugs and ways of helping CF that what they are doing, IV's seem to be there only answer and for me i've finally been given helpful alternatives, it's now 4 weeks post my IV's i've battled through a 2 weeks virus that went straight on my chest and come out the other side still feeling well.  That for me is amazing and that's what i want for my friends, they still seem to be going round in the same circles, lots of IV's and them not lasting as long off them before needing orals, why is that.  Why aren't they looking for other treatments and ways to help them.  I was put on 4/5 different medications when i was admitted immediately and they must of made a difference because of how well i'm doing now.

I get so frustrated i wish i could move all my friends to Manchester, it's hard for everything that i say not too look bad on the CF team and the staff on the wards i don't mean no harm, they can only do what the people above allow them to do and that's where the restrictions lie.  The CF team and ward staff aren't even allowed to talk about the campaign going on, we've been trying to arrange a meeting with them but they need permission from the powers that be before they can talk to us.  How pathetic is that, it's all been blown out of proportion, we should be working together, it should be something everything wants, not something they whisper their support behind closed doors.

Every other CF unit has been successful because the consultant has been heading the campaign, fighting for what they believe there patients need.  CF is the kind of disease where people who work with us get really involved in our lives, they become part of a family and most people who work with us, nurses especially find it really hard to leave and go to work somewhere else.

This is what i'm like my friends with CF are my family, i love them all so much and i'd be lost without them, it's the hardest thing loosing friends with CF, it makes u fight harder but the disease we all have can be such a bitch at times!


It's hard to believe still to this day that 4 of my beautiful friends have lost their fight, i miss them everyday.

 Jeni Corne, Natalie Sumner, Stacey Marsh and Natalie Buckley.  Breath easy girls xxxxxxxxx 


But together we keep each other strong, last night was Aaron 20th Birthday, he's been thru a horrible time recently and is currently waiting on transplant list, i hope everyday he gets his call, he's like a little brother to me and his strength is amazing, fighting so hard each day, it breaks my heart to see him like this, but one day soon he will get his shiny new lungs and i know he'll be driving round like a mad head again and maybe even running!! I hope it's soon!!

Just thought i'd share this photo taken last night, sssssssshhhhh though there was not 4 Cf's all in the same room and definitely no cross infection happening at all, see we even made masks!! lol xxx
It really is for all my friends that i'm still fighting for this CF Unit @ UHNS, some may say i care too much and that i should just look after myself, but i've never been able to do that, i'd like to think that i don't have a selfish bone in my body.  
I'm the kind of person that will go without to be able to buy my friends great birthday presents, i love buying presents, i love spending that time picking out the perfect gift for people, although been so good doesn't make it easy for people to buy for me apparently.  People seem to find it really hard to buy me gifts, thats why for christmas and birthdays i've normally picked my own presents out, i don't get surprises anymore, but then i always prefer to have what i want, so i'd rather go shopping with people and point out the things i like, than have a bunch of surprises i don't really like!! 


Going through a bit of dodgy time with all the sentimental items i've been keeping all these years at the moment, i just kept every teddy, every photo, every trinket and now one side of my room at my mum n dad's feels like i've stepping into a time warp of my bedroom from when i was 15.  I'm 27 now i don't want a room like that, i want a grown up room, with pretty things from next.  I just need some funds for that, the 10er i have in my purse won't go very far! So i think i'm gonna have to separate myself from some of the memories and move on, i missed free listing weekend on ebay last week so i'll have to get prepared for the next one or maybe i'll go do a Car Boot.  At the end of the day i really can't keep everything and i'm sure every girl has to go through this at some point, i kept it in my spare room all spread out when i lived with Steve so it never really bothered me, now it's all in my room i just don't want it.  


I think it all comes down to making sure i have a fresh start and have new challenges and new things to distract my mind and help me through this time of my life.

Saturday, 17 March 2012

Dr Jones, Jones, Calling Dr Jones

Thursday i went to Manchester for a Clinic Appointment, for me it was kinda a big deal. Under the care at Stoke i was generally only last 3-4 weeks before i'd feel poorly again and having this virus i was worried what it was doing to my little lungies that i didn't know about! I feel well i'm just coughing and have a lot of crap to clear.  I've been doing my nebs lots though and really trying hard to stay well, its only been 3 weeks since i was discharged so i was scared this virus was going to start getting me, especially as i've had it about week and half now.

I arrived at Clinic and went into the room, Dr Jones was the first to come and see me, I'm used to the consultant coming in last at Stoke and i'm really not used to a consultant actually doing spirometry with me.  It's weird, but in he came with the lung function machine "dinosaur".  I'm used to tiny little electric machines to do ur spiro on so this is like going back to the dark ages.
I surprised myself, i'd expected a drop when i left hosp i blew 1.08, the number i always to try get to was 1.0 litre, if i blew under which has been most the time i'd be disappointed.  So when i blew 1.0 exactly i was pretty impressed with my lungs.  Finally they started to behave, it must be the Meropenim nebs and the Azithramycin everyday, since i've had the virus i'd doubled the dose of the Azithramycin.  Normally i would of had to put myself on Cipro too but i didn't feel i needed it and you know my feelings over Cipro and sunbeds.  I prefer the sunbeds!! lol

Dr Jones (r u like me that things of that Aqua song everytime u hear his name, i have to stop myself singing it in my head when i say his name)!! Well if you didn't think of it, you will now!! ha ha.
Anyway lol he wanted me to have another oral antibiotic just to protect my lungs cause the virus was lingering around, he mentioned Cipro but i asked for something else and he gave me Septrin so i'm on that for 2 weeks now with my Azith and Mero, hopefully i can carry on beating this virus and stay well for a lot longer.  It would be amazing if i can go a few months without needing ivs, it's something i've not done for about 3 years, so i have a target.  My next clinic appointment is April 26th, 6 weeks away then i will need to have ivs in may before the skydive, so i have a good target and it would be amazing if i was able to achieve this.

They were really please with me at clinic, i've been put on a small dose of iron tablets because i'm slightly anemic which is something i've never had before, i need to eat more brocoli and red meat i guess.  Although compared to where i lived with Steve my body probably doesn't know what's hit it with all the veg i'm eating, my vitamin C levels must be pretty good.

Dr Jones has also upped my Intraconazole dose, so i'll now be taking 200mg in the morning and 100mg at night, my blood levels show that my levels of absorption are low which could be for a number of reasons but my omprezole i take at night could be affecting it, so that why i'm now on a higher dose in the morning,  so hopefully my liver will behave itself.  It's good to have people around me who understand about my Aspergillus and how to treat it because it was one of things that frustrated me so much at Stoke.

Now for the interesting bit, when i was admitted in Wythenshawe one of the first things they noticed about me was the colour of my sputum, they said it looked very milky and like my feed! They tried a few ways to see if they could find out if feed was going into my lungs but nothing was conclusive.  Since i've been home at my mum and dad's house i have more or less two weeks off my feed because of the living arrangements not on purpose but i seem to of help my weight so that's good! Anyway i did a sputum sample and the whole team had a look at it and all agreed my sputum was now like "normal cf sputum" it's actually not milky anymore, its more yellow.  They don't know if this is because of my virus, so for the first time in my life, i've been feeding since i was 9, i've been told "NOT TO HAVE MY FEED" for the next 6 weeks. Which is sad is it was really exciting for me, been told not to have feed rather than been asked if i need to increase my feed.  If feed is going in my lungs it may of been one of the factors that been making me so poorly because if one thing i was always religious with at least 5 nights a week it was my feed.
So now i don't have to do my feed i just got make sure i keep eating, obviously if i start loosing weight they will rethink things, maybe give me extra calories in the day instead of my feed.  It maybe that because i've not been doing my feed that i've coped better with this virus and my lung function hasn't dropped so quickly after iv's.

I really happy i decided to move my care, they do things slightly different but i'm not scared of it been different because i really trust them.  I think Prof is fantastic, everyone does but i really like Dr Jones too, they listen too you and really understand and try and find ways to help you.  For me it's all about been able to trust the people who are looking after you and i really do feel that with Dr Jones.  Money a little tight and putting petrol in to drive to Manchester for a clinic appointment was kind of painful, but i teamed it with a trip to my lovely sister in laws who lives 30 mins away from the hospital! As i was at clinic though i felt so happy the idea of the cost just went away, i felt happy and safe and really looked after so the cost of some petrol really just doesn't compare.  That's what i want for my friends at Stoke, i want them to feel safe and looked after, instead of upset, ill and frustrated.

All in all a positive clinic appointment, something i'm not really used too! It a nice change to feel happy walking out clinic with a bag full of medication that i didn't even have to go and sit in pharmacy and wait for for half an hour, it was given to the CF Pharmacist and sorted and then bought to me whilst i was seeing the physio, dietcian and social worker and having my port flushed.  I had my port flushed for first time with no ice too, i told CF Nurse she could have one go and if it hurt me it would be the last time i was letting anyone needle my port without it been numb because they also use different needles to what i've been use to for 15 years.  Luckily it didn't hurt and i would happily let her do my port in clinic again without ice, but if i was on the ward where ice is on offer i would still choose to put ice on for few minutes first.

Here's to me and little body behaving for a change, lets hope the few little changes help, the septrin, intraconazole and the iron tablets and fingers crossed i can keep my weight up, it would be amazing not to need to have my feed although i would never have my peg removed.  Another great thing is at the moment if i'm not feeding i don't need my insulin, until i see Dr Rowe on the 26th April and she will make a decision to if i need it with meals in the evenings, i just got to spend the week before clinic doing a food and blood sugar diary so they can get a better picture of what's going on with me.
Then trouble i've been through with them just isn't worth it and it never has bothered me, it's just a lil tube and i'm completely comfortable with it, don't catch me covering it up when im sunbathing in a bikini! In fact its one of the best places too see how white i was when i go on sunbeds!!
My mission over the next few weeks is to be this brown!! xxx Sunbeds tan me please!! :) xxx
N i wouldn't mind to be on a lilo in a pool either but we can't ask too much from the world now can we! 

xxxxx


Thursday, 15 March 2012

Don't look down!!! :)

I'll have my eyes closed, be screaming my head off and heart will be beating out my chest, but i'm so excited.  It's amazing that i've been signed off and told i'm aloud to jump out of plane.
I'll be doing a Tandem Skydive on Saturday 26th May at Langar Airfield, Notts and i just can't wait.  I arranged one last year and it was an amazing day! 17 people got sponsored and we raised £6,000! This year my mission is to try and get 30 people, so far about 19 people are signed up and we're getting more people interested all the time.  We've had so many people interested and sent out so many information packs its cost me a bomb in printer ink, but it's all worth it.  I love fundraising and i love little projects and organising.  This is when "Litttle Miss Joey" is at her best when she's doing what she loves.  The hardest thing is getting people organised, signed up and paid there deposit then its all down to them to raise their sponsorship.

I will be paying for the Skydive myself, that's one bonus of not having to pay bills and food shopping anymore, i can afford to pay for skydive myself.  After all its an amazing experience on offer to me because i'm raising money for charity.  This year i hope my team of skydivers will be able to raise around 10,000.   Thats my goal so if you do know anyone doing the skydive then please sponsor them, they really need your support.
I hope also to be able to pay for the DVD and Photos myself so i can have an amazing photo of myself like Giles Lund did last year! He is one of my friends husbands who has CF and he amazing raisied around £800 for the Skydive last year.

I can't believe that i'm going to be doing something so amazing, i've done paragliding before in Turkey and loved every minute of it, i'm not much for looking ar the sceney i like to do spins and fly around loads in the air.
I want to raise as much money as possible, i was able to raise about £700 for my husband last year so this year i would love to be able to match that for myself, but i can't do it without your help, so what i'm asking is if you could spare a little money towards my cause.

I'm raising money for a CF Unit @ UHNS, having just moved my care from their because i was so unhappy with the care i want to help improve things for my friends who still attend the CF Centre at the North Staffs, not everyone is able to move there care and get inprovements like i have done.  My friends are still cared for on a general respiratory ward, when the knowledge levels of CF is fully reliant of the specialist CF nurse.  I moved my care to Manchester where they have a 22 bed dedicated unit for the 350 patients and have nurses who know so much about CF and how to care for the patients that difference is incredible. What they really need at Stoke is a small unit of 6-12 beds with dedicated staff to help look after the patients and that's what i'm fighting for.

So if you can just spare £2 today, that's less than the cost of a Pint and Packet of Crisps xx 
 You can sponsor me in a few ways, by text or online with my justgiving page!!

Text to 70070

Joey79 
followed by 
£1, £2, £3, £4, £5 or £10.

or
JustGiving - Sponsor me now!


Thank you for reading and hope you can help me!! I really appreciate it!!

All my love Joey xxxxx

Tuesday, 13 March 2012

Unpacking my boxes & Unloading my thoughts!

So my room finally ready and last night the bed was put up so with all my new mocho n pink matching curtains, bedding and cushions.  Then a pink lamp, washing basket n clock, i also got Sophie a little pink bed to match too, it no wonder i have no money now! Today was my day off and slowly started to unpack some boxes, i found it really tough unpacking, which is why i'm sitting here now writing this and having a break from it, cuz its been hard work.  I'm like most people hates packing and hates unpacking, but unpacking ur life from a house back into the room at your mum n dad's cause life went wrong, that's what this girl finds tough!
Been thinking alot today about what i need to do to try and make me happy n i know it kinda comes down to making sure i can stay well.  If i can stay well i can start to turn my life around and have more energy to go have fun with my friends! I get so scared of over-doing things now, because before last year one night out and i'd take days to recover, i was on orals or iv's so much of the year.  

Orals like Cipro mean i can't go on a sunbed and that's one thing i'm loving right now, my beautiful brown skin that i'm working on! I wanna be ssssoooo brown, don't worry i won't go orange!! I can already tell the difference in my face, i don't look pale anymore, even when no make up on, i have a lovely sunny glow which makes me feel so much better about myself.  So as long as budget my money for sunbed courses i'll be a happy girl right now!! :) xx

N Iv's well they just ruin all ya photos on a night out, my port is in my arm, so my needle is always seen, i don't like wearing a bandage and it's so annoying having to take a cardigan to cover things up! So my mission is to be needle free for as long as possible, i'm quite proud of myself, i'm still fighting this virus, my dad is still off sick and i'm going to work, i'm coughing alot of crap up but i'm being really positive, i don't feel ill with it, so just keep doing the nebs and clearing the crap and i'll be all good.

The Meropenim nebs at the moment with the cough is like putting myself through a punishment, it's hard enough with the taste sometimes to breathe it in, but at least i'm coughing up rubbish with it, its like physio round 2 sometimes, but i'm still been good having it twice a day as much as i can!

It's hard changing the way i think, like i'm so used to been able to get away with not doing much medication and getting away with it but now i can't do that, now i realise and it's taken along time that if i want to be well then i need to do more.  The old me a few months ago if my care was still as Stoke probably would of got a virus like this and after a few days given into it and rang up needing ivs. I think it took moving my care to give me the fresh approach to looking after myself and finally feeling i have people who believe me and believe in me! I got so frustrated with Stoke they had nothing new to give, but if only they'd open their eyes they realise there are so many ways that they could really change and help their patients more.

I now have such a more positive outlook on my health, where before i was so depressed and unhappy, my health took over my life, for last two years i had over 15 iv courses and not really felt much benefit from them, my life was CF and been ill and i didn't know anything else.  I believe it was the reason my marriage ended, how can anyone really n truely love someone if they have forgotten how to love and look after themselves.

I became so lazy and so lethargic, i was capable of so much more as a wife, a happier healthier me would of been more fun for a start, i would of wanted to spend time with my husband and should of fought more for his time.  Steve was never a person who liked to be told what to do, so i just let him do whatever he wanted, if he wanted to go out on his bike all weekend he would, n what would i do, i spend the mornings in bed and rest of day on facebook or watching tv waiting for him to come home, but knowing he'd be tired.  I never fought for his time, i never said i wanted spend time with him.

We got to the point where we believed we had nothing in common, if i was out n he was in, he'd watch films on his own, we'd never watch them together, he really thought we couldn't watch films together because i wasn't interested in same as him.  We never went the cinema, we never went bowling, we never did anything, most we'd do would be go for tea and even then we'd both be on our phones.  I used to laugh at people who'd have a date night, but now i think how clever, i never believed we needed it, i thought we were forever.  You know things are wrong when u sit with tv on, on phones, i pads, laptops n don't speak unless its to say how cute sophie is or who's turn it is to let her out.

If only i'd realised sooner, if only i'd moved my care and felt well, got out of this mess with my health a long time ago, maybe we would of had a chance.  I used to get butterflies when i'd see his van come into the street and know he'd be home, but this last 6 months i felt nothing, i was empty inside, deciding what to have for tea was nightmare and i'd never get up and cook, i'd just expect it from him, i did the dishes, n even them i'd prob do the next day or leave till i had a pile or no plate.  Since moving in my mum n dad's dishes for 4 people is nightmare there is always a pile sat by the sink and i just do them, sometimes twice a day.  I can see the difference in me, but why am i doing them now, here, when they are three other people who could do them if i didn't, when at home in my own house i could never be bothered.

I hope this change in me isn't because me n steve are mean't to be apart cuz today i'm not dealing to well with that thought today, I want nothing more than a life with my husband n i miss him like crazy. I think even Sophie know's i'm not coping today cuz she has given me lots of doggies cuddles.  She knows when i need them, bless her!

Well now i've had my emotional half an hour, it's time to go unpack a few more boxes, i have way to many ME to You teddies etc to find homes for and then its the final of Biggest Loser the UK. Yes i'm a huge fan! x Sad i know!! But i love them although i love the USA one so much more!

Thank u for reading.

Love you all xxxxxxx

Sunday, 11 March 2012

Thank you xxx :)

I just wanted to Thank everyone for such kind messages of support after reading my last blog update, it been really hard telling people what happened and this once i was ready was the easiest way to tell people, for some people i'm sorry you didn't find out from a text or phone call from me, it got so hard this seemed the best way.  I can't believe how many people read my last blog, even the one person i told u would never read my blogs read it.  Not sure what he thought though he not the best at talking about his feelings, it's kinda part the reason we in this mess.


Why is it it's so hard for men to talk, women cry get all emotional and men just bottle it all up.  I've been crying n talking to my friend about it all instead of talking to him and he's just been sitting thinking it all over and over by himself, so i guess i'm to blame too! I really do know the man i married, he doesn't change his mind, when i decision has been made, he's thought about it to the point he believes it's only decision to make.  He given up on so many things in his life, jobs he just walked away from, but he one them lucky one that always land on their feet. I never ever thought though that he'd give up on me and us.  I really believed i'd be the one solid thing in his life! Like i said jobs have come and gone, but this time he stuck with the job n let go of the wife!  He always worked for us i know, he wanted to make a good life for us, that why i hate the fact he put in a beautiful bathroom just weeks before we broke up and i so loved the shower and the beautiful sparkly floor!  He always works so hard, he one of those people u hate, cause when the alarm goes off in the morning, he's wide awake, gets out of bed and gets ready to go to work or get stuck in to the job in hand.  Unlike me i need to snooze for at least 30 mins, then i need a cuppa to start my day, then i can start getting ready.


I guess we both stopped working at it, i think i've believed i've been too ill, n to be honest i felt ill, since Wythenshawe i think he would of seen a big difference in me, i'm so much better and have so much more energy, even this nasty virus which me and my dad have had hasn't knocked me down.  Had it for a week now, it definitely on my chest now and i'm coughing up loads of crap, but i'm doing my nebs and clearing lots and i still have energy i actually haven't felt too ill with it.  I've got clinic on Thursday in Manchester so i'm hoping it hasn't affected me too much, after reaching a lung function in the 40's and 45% during my Imatropium trial i really felt amazing and i hope its not been damaged too much from the virus.  My dad went to the GP after having a week off work with it and has been signed off for next week too after doctor telling him its gonna be one of those difficult ones to shift, great!! He gets another week off and i'm off to work just like i did last week.


I'm being haunted by this song at the moment, it's on the radio everytime i'm driving places, i'm not sure the words of the verse fit my life right now, but the chorus i turn it up and sing it loud!! So if u see a mad head singing in a blue Mazda 3 then that's probably me!! 


What doesn't kill you makes you strongerStand a little tallerDoesn't mean I'm lonely when I'm aloneWhat doesn't kill you makes you fighterFootsteps even lighterDoesn't mean I'm over 'cause you're gone

What doesn't kill you makes you stronger, strongerJust me, myself and I
What doesn't kill you makes you stronger
Stand a little tallerDoesn't mean I'm lonely when I'm alone

Like i said i've been singing this song lots and i really do believe in the title, what doesn't kill u makes u stronger! Right now, even though i have my weak teary moments, i feel really strong, ready to face the world and not on my own, cuz i know i'm not alone, i have my amazing family and friends around me and Steve isn't gone from my life, he is still my best friend and i still am able to ring and text him when i need to! 
So many people around me thought i wouldn't get through this, i know my family were really worried especially when i actually ended up in Wythenshawe a few days after the breakup x I stayed there for two and half week and didn't come home till i was strong enough not only physically with my little lungies but also mentally.  When i finally came home i was ready to face moving it out, i'd sat and planned it whilst in hospital, the me, my mum and best friend Ula packed the house and i got thru it quite well, i didn't actually cry till i was stood looking at empty house! Then i cried driving home, which is what i still do now, i've taken Soph round to what i'm not automatically in my head calling Steve's house a few times and each time i pick her up i tend to cry driving home, not hysterically, u know the gentle tears that just role down your face! Then i find a happy tune n sing along n by time i get home i'm composed and sorted again! It's just hard leaving and driving away from the place that was mine and leaving the man who i thought i was marrying forever! 
I think i'm coping better than i ever thought i would, it's cost me a fortune to move to my mum's but i wanted to move in and feel like i was home, so i've had the walls stripped, plastered and now painted.  Hopefully in next few days i'll be able to unpack and get things sorted, we just packed everything and then at this end when i unpack i hopefully can get rid of some stuff, don't think you actually realise what you've got till u actually have to pack it all up, u tidy round and move stuff around and try but i must have my mothers genes' cuz i'm a bit of a horder too!! No where near as bad! Mum has little shrines all round the house for all the things that me and my brother have dismissed over the last 27 years of ours lives! So my mission is not to turn out like that!! lol! 
My mission is actually to spend the next few months concentrating on me, making sure i'm happy and healthy and to give my little heart some time to heal.  My parents are doing a good enough job at feeding me, the sunbeds r doing a great job at tanning me! I just need my finances sorted so i can spend a little more time pampering me! Lots of new clothes, times with my friends and save for a nice holiday i think! Role on April pay day! :) xxx
So again thank you for all ur messages of support. Love you all xxx 
xxxxx

Thursday, 8 March 2012

One door closes another one opens!

For a change not so much of a blog that's all about my CF! Although sometimes I wonder what makes people read this, do you click on my blog because i'm ur friend Joanne Hughes and you want to read all about me or do you think "oh that's the girl with cf i wonder if she's ok?"  I hope it's a mixture of the two!! I kinda have this thing because i'm just plodding along living my life not on transplant list that i'm not as interesting as some of my other CF friends who blog regularly! I'd love to get my followers up, i guess people don't need to follow because i post my blog updates on facebook all the time so you just click the link and read away.

So i sit n wonder is my life actually interesting n do people like to read about it! Tonight i've kinda filled the news feed by setting up a Facebook page called Little-Miss to have a place to post my blogs! N maybe do little updates rather than my random status's! On my new page i've put in up the last few blog posts from this year for people to have a read thru, if u never read my blog before, then Welcome.

Things have changed alot for me over the last few months, i'm not sure everyone knows yet as i've not been able to change my profile on facebook, changing my status makes it all a little too real, something i'm not quiet ready for yet, but i'm guess i'm kind ov ready to let you all know that me and my husband split up at the end of January.  I guess really we just grew apart, stopped talking, spending time together, we were like two friends sharing a house n a bed.  N his snoring was ssssoooo getting annoying that i was even starting to save for bed for the spare room, some nights i really couldn't sleep, n i'd get so angry! I'm sure some of you know exactly what i'm talking about.

So after coming home from Wythenshawe i finally felt strong enough to come home and move all my stuff out the house and move to my parents.  So here i am, currently actually sleeping on a matress in middle of living room floor as i've decided to decorate the room, if this really is the end of my marriage then moving home has to be a fresh start and a new me! A girl who looks after herself, wants to stay well and has the power and strength to get thru this.  I've kept my little doggie Sophie, oh how i love her, she just cuddles up to me and gives me cuddles and makes everything feel ok, when i've cried she's even licked my tears.

Splitting up was a real shock to me, i thought we were going to talk and try and work at things, so i was shocked to find out Steve had decided he wanted to be on his own, the thing that broke me was the feeling of been unloved! Like why wouldn't he want to be with me anymore, why is being on his own in life, better than being with me.  I understand we weren't making each other happy, i was so miserable and i probably didn't realise how much of an affect it was having on my health.  Sometimes i look back i think maybe i let myself get ill cause i wanted attention of the one person who i felt wasn't interested in my life anymore, but i think that just pushed him away more.

So i'm lucky i have such amazing friends and family around me, i had so many wonderful visitors in Wythenshawe to help me through everything, been away from home at the beginning was really tough, i cried alot, but once i settled in, i started to realise that ending up hospital for min of two weeks was gonna do one of two things, "make me or break me!"  I'm lucky it made me, getting away actually gave me the chance to deal with what was going on, cuz trust me i'd not only lost my husband, i'd lost me too.

I think i'm slowly starting to find me, coming out of hospital after 2 n half weeks i felt strong enough to go pack my life in my house up, which took 4 cars n a van with my furniture in, steve pretty much has a sofa, 2 tvs and a bed left.

My mum, dad and my brother have been absolutely amazing, they welcomed me home as if i'd never left, they've moved heaven n earth to make me n sophie feel safe, loved and happy living here.  Sophie is even getting walked twice a day, although in the mornings she prefers to stay in bed with me than be dragged out in the cold, but my dad's working on her! She's his get fit plan!  

I have no choice but to rebuild my life here, which is why i've had the room plastered and bought myself new bedding curtains, lamp n some trinkets, to help give me a fresh start.  My brother has given up the big bedroom which was mine for 21 years and he's moved back into the box room.  We're all living in a right mess at the moment, boxes and stuff everywhere and i hope to get painted n sorted n unpacked this weekend.  So i can start to get into a routine at the moment, i'm not even straightening my hair and have lost my brush, i'm using my dad's comb n just giving my hair a quick blast with hair dryer.

One way i'm trying to get me back in my tan, i've been going the sunbed shop so i can be brown again, there really is something about a tan that makes u feel so much better about yourself.  It helps hide my pale n ill days too! N i'm trying to be really good with my treatment too, i really want to stay well now!

My life in such a different place right now, but i'll always love Steve, he's my best friend and i miss him everyday.  I truly thought we were meant to be forever and i believed he'd be the one holding my hand when my final days come.  I hope one day he realizes what he's lost, the best day of my life was my wedding day and everyone who was there could see how much we truly loved each other, he was so happy that day, a grin permanently on his face!
What happened in those two n half years i don't know, i hate that we've failed and hate that we're not still living our lives together, maybe one day hey! I know if we are mean't to be we will be! I don't want to find anyone else and i don't want to be single, i want to be his wife forever! But i know n i mean i really know that for a long time we've not been making each other happy so i know this is probably the right thing for us! Doesn't mean it doesn't hurt like hell!

Luckily we ended on good terms, if i ever could of asked for a way to break up i guess this would be it! After we had decided to break up, i asked him to take me out for tea to the Orient Chinese Buffet place we always went, i wanted Satay Chicken and Jelly n Ice Cream! We had a really good chat, it was like instantly neither of us had to try anymore and we were just able to talk.  We text and speak on phone, i know he will always be there for me and i've even spent last two sunday's with him n sophie dog at the house watching top gear and some random programme on bio we found called storage wars, its so stupid but it's kind of entertained us! lol! I'm so glad i can still see him and we can be friends because 6 years is along time to share everyday with someone and them knowing everything about you, i would hate it if i couldn't still tell him things!

He's never read my blog before, doubt he'll start now, i always wanted him too, i thought maybe he'd understand me more if he did, when i used to sit n write them he's occasionally look over my shoulder n read out in a squeaky voice my words, putting me right off, but making us laugh! I'm not sure he'd laugh reading this blog to me i guess it's all become real now! For him he's working all the time and going bed early, so he doesn't have time to miss me!  i guess i'm keeping really busy too, packing, unpacking, moving, working it's all keeping me busy and once i unpack and move in properly who know's how i feel.  I have people around me all the time so it's hard to feel lonely, but sometimes i do when i get into bed a night! But i been watching Glee before bed to take my mind off thinking!

But now i really need to go to bed! :) x I'm tired n have work tomorrow, so i need to set up camp in the living room! I've sleep well tonight i think!

So here's to my new start! On plus side paying my dad £150 a month for bills n food is alot cheaper than the £450 i was paying, so i'll be able to sort my finances out, pay off my credit card, treat myself to a new laptop and maybe try get away on holiday! I have more time to spend with my friends and more determination to stay well! I always thought Steve was my motivation for living, maybe the last year or so he's actually been apart of my crap health, i'm not blaming him for one second, whatever went wrong with us took 2. I just wish i'd realised before things had got so bad.

So bare with me whilst i find myself again! N thank you to all my friends and family for all there help and support!! xxxxxxx

Sunday, 4 March 2012

Fingers crossed i don't actually get ill again!!

The future was looking good, i was a week post iv's and i was still feeling good, i was starting to get into a routine and having the energy to go out with my friends on a night out was definitely a high point of the week!!  In fact last night i looked, in my own big headed opinion quite hot! It's a different story today though and it's not because i've over done it, i felt well on night out and it wasn't a big crazy one, just tipsy enough to have a good time!! lol

Ula (left) and Steph (right) we had such a laugh and a good night in Newcastle even though it was quiet!

Loving the fact i'm getting my tan back, need to get myself to sunbed over next few days for a top up! I love been brown n all tanned, it helps so much for when i'm ill, i've said before than CF is an invisible disease, sometimes i really wish people could see my lungs n how hard it is to breathe with them, but for me and my self-esteem i need to wake up n put my make up on and hide that tired n pale face and when i've got a tan that really helps to hide that, n it also means my dark hair doesn't wash me out too much.  I hate having pale skin!

Today however i feel like a bag of crap as i've caught a damn cold, my brother had one, n now me and my dad have started with it, so at least no one can tell me it's cuz i went out and over did it or it's cuz i didn't wrap up warm enough hey!! Cuz my Dad has it too, soo there!! lol xx Come on, you know you were thinking that! It's probably been in my system for a few days from my brother been poorly with it Thurs/Fri so me and dad woke up with it this morning! Sod's law! Just as i'm feeling so good!

It's one of those cold's that give u a tickly cough and you just know you're gonna have the worst night sleep because of it! Argh!! So now i got a big fight to get thru this without too much damage to the lungs and me because i really don't want to end up back at Manchester so soon after coming out! It's really frustrating right now, i know its not something my nebs and physio will help with in fact i'm really gonna struggle to tolerate my Meropenim nebs as it makes me cough normally.

Not even shopping cheered me up today, i went with Ula, yesterday we had lots of fun trying on dresses and outfits n buying lots from New look with my 25% off voucher! Today we took a few things back and exchanged them, but my cold was really starting to kick in, fussy head n blocked nose left me struggling to concentrate then as the evening has gone on the tickly cough has come with avengence, i know i'm gonna have a rubbish night sleep, so i'm plumping up the pillows and getting out the vix vapour rub!

So tomorrow i'm going to have a duvet on sofa day n catch up with my soaps and rest lots.  I just hope i can get through this, i don't want to have to get Cipro out the cupboard because that means i can't go on sunbed!! So come on body, over night, lets sleep, lets fight this beast of a cold n let feel better soon!! :)

Although my fight for next few days is a hell of alot smaller than my friend's right now! :( xxx
If  you are regular reader of my blog, you'll know all about my amazing friend Aaron Hall who has CF too, he's 20 in few weeks time and he's on the lung transplant list, he's like a brother too me, i care about him more than words can describe, this weekend he's had to have surgery for a blockage in his bowel, he couldn't tolerate all the meds he was given, was been sick alot and unfortunately the blockage just got worse n worse n he was in so much pain and dosed up on drugs he became really poorly, so as risky as it was with such delicate lungs, luckily the operation went well, but he is still in Critical Care recovering, so please send all ur love support and strength to my boy! He a tough cookie and will come through this ready to continue his fight for his shiny new lungs! Love you Azza Hall xxx Stay Strong xxx


Thursday, 1 March 2012

The new routines!!

Well i've been home nearly a week and i'm slowly getting into my new routine with my treatment.  Now i have to have few extra tablets to take it's been easier to fill my new tablet case! Finally thanks to the Pharmacist at Wythenshawe i have one that is big enough to actually hold all my pills at night time as i take a lot!! No room for my creon but i can cope with that! Everything else fits in which is good.  So that's making life a little easier, takes about 15 mins to set it up for the week, but save me 5-10 mins a night.  I used to spend so much time each night sat delving into my drawer getting every bottle and box out the drawer n getting a pill or two out to swallow, now its a lot easier, i've tried them small ones u buy from the chemist but just not enough room for the amount of pills a CF needs.  Wish i'd of had one of these years ago would of made going to bed a lot easier, now i just swallow pills from the case and get some creon out, set my feed and inject my insulin, getting into bed is quite a bit quicker now.
Talking about insulin, i've got to do a full profile over a few weeks with a food diary and testing my sugars 1 and 2 hours post because my sugars seem to peak 1 hour post meals! They don't think i'm gonna need insulin with all my meals but most of them i will.  N i so gonna have to cut down on the sweeties, instead of eating the whole bag, just have a few!! Boo Hoo!! I'm not going back to see Dr Rowe until April so i'm gonna start the food and blood sugar diary next week.

This week been all about getting into a routine with my nebs, doing my atrovent n hypertonic saline in the mornings then pep and acapella together if needed to clear then doing my meropenim neb and then at night doing the meropenim neb again! That's the thing i'm having to get used to doing nebs at night time, but i guess i'll soon get used to it! Doing it thru my Eflow is lots faster so just have to keep telling myself it's gonna do me good and hopefully keep me off ivs, it's been a week now and i generally after week and half that#s when i've started to go downhill. So fingers crossed this time that all the hard work has paid off!
My appetite is really good at moment, sign i'm still doing well, in fact i tried on a size 8 jacket today n it was a little tight around the button, not good, normally monsoon alot of stuff in the 8's is too big for me! So i must be eating far too much!!

I'm also trying the whole not going bk up to bed with my cuppa n sitting there watching tv for another hour, at the moment getting up in morning isn't too bad! Going back to bed so isn't good for me as it makes me lazy so i need to get up!!

I also have a set of exercise pedals, i've used them once this week, watching eastenders, for 5 minutes, i think i might go take a photo of them and use them for 5 minutes tonight too, tire myself out before bed.  They take up alot less room than an actually bike and sitting on sofa to exercise way more appealing that an uncomfy seat! Although don't tell my physio i not been sitting on a proper chair with my back straight!! lol xx
I just want so much to look after myself, i feel really good with my lungs at the moment, i even walked from my the sunbed shop 0.4 miles up a gentle but steady hill to my friends house on tuesday then i walked bk to pick up my car from the car wash, she's all clean n sparkly now and getting her dent sorted next tuesday! So i'm slowly getting things organised with my life!

I've got my meeting tomorrow with the hospital at Stoke regarding my reasons to leave! i'm hoping all my reasons will come flooding back to me cuz my brain has gone blank tonight! lol.  But i'm never one to have nothing to say so i'm sure when i get in the room and start talking my gob will take over!

I've also decided i'm going to get in to using this twitter! #joeyhughes2009, follow me! i've never really used it, so i'm gonna try my best to get into it, it'll be good to spread the word of my blog and also to help with the CF Unit Campaign! So if u're gonna follow me, follow the campaign too! #CFunit_UHNS.

Hopefully i'll gain some more followers for my blog from my twitter account!! xxx

I have more to tell you, so stay tuned xx lol