My life changing and i'm not ready to accept it!

Now for an update on me!!


Over the last few weeks since i got out of hospital to say i've been feeling down is an understatement.  I've been frustrated, crying lots and generally not really living my life.  


When i went in hospital for the first time this year for my iv's, i was really struggling, clogged with so much sputum i felt like i was out of control.  Everytime i have IV's i have them at home, i honestly don't think most the time that at my hospital in Stoke they actually do more for me that what i can do for myself at home.  It was a huge decision to put myself in there and i actually felt excited, i always get told off when i'm ill not for resting enough or doing enough physio so i couldn't wait to finally be a good girl and feel really well at the end of it.  


2 weeks i stayed there,  i had to have my drugs changed for a third week of Iv's to which i came home for and finally back at home, my third week n different drugs seemed to do the trick.  My lung function had been 27% the second time it had been this low this year, but finally i hit an the highest it had been all year of 43%.  I felt brilliant, i could breathe and i didnt feel clogged, the week of Meropenim had done the trick.  


For about a week and a half.  Then i had to give in to putting myself on Cipro.  N i'm still on it now, i've had 3 weeks tomorrow and now i have to come off it, half way through my Cipro and it was 30%, i didn't want iv's then, i said i wanted to wait till i felt like i really needed them, but now i don't see me making it thru christmas and having a good time unless i give into more ivs.  So tonight i've made the call and looking to start them friday.  Least then i can get two weeks in and finish in time for Christmas, hopefully means i'm gonna feel happier and gonna have some energy too.  


I've kind of stopped living, i feel lazy and tired, i'm frustrated with myself, i lie in bed in the mornings dreading getting out and how i'm going to feel, cuz it bed i feel warm cosy and well.  It's when i get up within the first half an hour i know if it's gonna be a good day or a bad day.  Yesterday i hit all time laziness, first time in a long time i stayed in bed till 2.30 on my day off, normally, i'm up n doing things on my day off at least by 11.  I naturally wake up between 9 and 9.30, my alarm goes off for work just as a back up to tell me the time, in case i've not quite peaked at the clock yet.  


I go to work and on the days when its not physically drained me and i feel ok, i'm still scared to go do anything after work in case i tire myself out.  I love shopping and I love Christmas, i love buying presents for people.  It really is my favourite shopping time of year, i think i'm quite good at it and i love trailing round the shops finding the perfect gifts for people.  


Today i felt quite good after work, so decided to get have a little shop around, but no as soon as i left my little monsoon bubble n started to walk round with my coat n bag, the tiredness came on, the chest pain started hurting and once i'd bought myself some new wrapping paper to match my new gift bags that was me done! Tired n on my way to the car lugging my bags n wishing my car could be just like "Herbie" whistle and she's comes too you!! 


So tonight i come home and text me CF nurse to see about starting IV's on Friday.  Something i'd kind of planned to do next tuesday and just have 10 days as it's my Monsoon works Christmas Party this Saturday, but i figured if start friday, by tuesday i might just be feeling well enough to shop!!  I'm not used to this, normally i'm my families "Christmas fairy" i do most of the shopping for my mum and grandparents just because i enjoy it so much and i can just think of brilliant presents to buy people.


I got to be a good girl, i'm having them at home, work is busy and i have extra few shifts and could do with the little extra money.  Yeah yeah i know i need rest too, but i'll do that in evenings and i'll get lots of sleep and i'll do my physio.  I really am gonna do it all properly, not i have printer ink i might even get myself a chart made up, i always work well when i have a to do list to work through.  


I want to feel better so bad, i don't wanna believe that this is my life right now.  I feel quite traumatised by what my life could be like one day.  These are thought i'd need to push a side right now and concentrate on me and i need to sort my head out to do that.  I watched Kirstie's Documentary "Love on the Transplant List" which you can still watch on BBC Iplayer.  I cried or should i say sobbed all the way through it, but most of my tears i felt like were for me, i dread the days when that is my life waiting on the transplant list.  i know i'm still along way off, i hope i'm still a long way off, but this last year or two have been really scary for me how much i've changed.  


I've had 12 and about to have IV course number 13 since January 2010.  It works out that every other month and some of my iv courses have been 3-4 weeks long.  i feel like i have been on permanent iv's but until last few months i look back and wonder why i've needed them all.


In August I asked my consultant to send me back to Wythenshawe Hospital to see Prof Webb for a second opinion on my care.  I had been there 10 years ago to see him and I had been two or three times since to Dr Rowe for Diabetes Care.  My appointment came through and I went to see them on November 23rd.  


I had wanted to see if i could have some kind of shared care set up with them, as i don't feel like some decisions about my intraconazole and other things have been made properly and with all the iv's i've had i wanted some help on improving my lung function rather than just accepting this and keep treating it with the IV's.  


At Wythenshawe though i can't have shared care, with them it's all with them all nothing.  So i've had a huge decision to make.  I've talked lots, cried lots and finally decided it all comes down to this:


I don't want a life full of WHAT IF's.  N so if i don't want that life i have to move and go and see if they can do more for me, the grass may not be greener, my eyes, ears might just be moving to something exactly the same and if thats the case i can move back anytime.  


My mum asked if i could have a 6 month trial, so that's what i'm doing, i'm just waiting for letter to be sent now from Stoke saying i want to move.  Then hopefully in the new year, i can transfer my care.  It's gonna be hard its an hours drive rather than 10 mins.  I hoping it will be worth it, they will admit me for 1-2 weeks to assess me and my medication and get to know me and i'm kind of looking forward to it.  At Wythenshawe they have 4 CF consultants, 4 CF nurses, lots of physios and dietitians who just do CF 24.7, they have to have a wider knowledge, more things to try and they have 350 patients.  They not advocating for patients, they have so many and a 22 bed unit but i'm hoping the change is going to be worth it.  They seem to understand alot more that us CF's have a life around their medication, rather than at Stoke they seem to think u have all the time in the world to do medication because CF is your life.  


I need people who will work with me, not people i have to battle and fight against to get the treatment i need.  So i hope this move works out for me.  Keep your fingers crossed for me. 


I don't know anyone at Wythenshawe, will feel a bit like billy no mates!! So hoping to find a few people to make friends with through Facebook.  


I am still going to carry on the campaign for a CF Unit at Stoke, it's something i've started, i believe in and still want to get for my friends, maybe i can move back if things improve.  


But for now i've gotta jump ship and make this move for me!! I just hope it improves my quality of life.  


I think it's time for bed now, so thanks for reading, please follow my blog.  


Hope ur all well.


All my love xxxxxxx

Fundraising Update:

It's been a few weeks since a blogged, my head has been in a right spin!!  So in the next few blogs i'm going to update you on everything!!


FUNDRAISING UPDATE: 


CALENDARS


Firstly the calendars, well for a good two weeks they took over my life! In a good way, i had an amazing printers who did me a great deal on the printing and decided to go for it and have 250 printed as with the binder i had purchased came 250 hooks and coils.  So i ordered them and spent the weekend at my parents binding, thumb punching and putting hooks on them.  Even if i do say so myself they look fab!! N i want to thank all my CF friends for been apart of it with the photos!

So with 250 to sell, it was a lot of pressure, but they have sold amazingly well and i'm so pleased!! Now all my costs are paid off, just need to collect the money in and I should make just over £1000 for the CF Unit @ UHNS Campaign.  Which i'm really proud of to be honest, but i couldn't of done it without all the amazing people who have sold them for me or who have bought one themselves.  So thank you!!


I still have a few left, they are £7 to buy, if you need me to post them out there is postage cost of £1.50.  You can buy a calendar through out website:  cfunit.moonfruit.com

Link direct to Calendar Is http://cfunit.moonfruit.com/#/shop/4557092031


CHARITY NIGHT


On 17th December we are running a "Christmas Motown Night" we have Randy Corwood, An American Drifter singing and he is really good!! Tickets are just £5, it's at the Florence Sports and Social Club.  If you would like tickets to come down for the night please let me know or email: stokesos@aol.com


SKYDIVE


30 Places are all reserved for the Skydive at Langar Airfield, Nottingham on 26th May 2012.


All the Skydive information packs will be ready by the end of the week.  So if your interested in the challenge then please get in touch with by emailing me: joeyhughes2009@gmail.com

I need your name, address and email for the moment and i'll send you all the information you need to get involved and book your place.  


JUSTGIVING


We still have a permenant justgiving site set up with the intention of everyone just sending a donation of £2, less than the cost of a pint and a packet of crisps.  Hardly noticeable to your bank balance or ur purse strings, even at this time of year.


So donate your £2, at http://www.justgiving.com/CFUNITUHNS or simply click on the widget on the top right hand corner of this blog!!




Thank you for all your support so far and i'll keep you all updated.
Will update you all more, when i know more!! :) xx

Midlands Today & The Sentinel Newspaper!

Well i waiting a few days for BBC Iplayer to have the video of the Campaign hitting the news, but no such luck, so i've done some dodgy filming using my phone on the tv!

The First Episode was aired on 5th November at 12.10am

The Second Episode was aired on 5th November at 5.45pm

I was so nervous watching, i have lots of niggly things that i would change about my interview but it went really well overall.  Was kind of exciting being on the TV even though i did kind of watch myself from behind a pillow.

The Campaign day went really well, i want to thank Chris for planning it all, he did a great job, as really all i did this time was turn up because I was in hospital!

Like i said in my last blog we started off on the radio and then we had a small pieceful protest on the A34 outside the hospital.  There was about 35 of us turned up and we had some banners and posters.

We had a really good day and it really made a the hospital realise that we are not going to go away, we will continue to fight for what we deserve!!

Radio Stoke!!

Fighting for a Dedicated CF Unit!!!

This morning I was on Radio Stoke at 8am!!

http://www.bbc.co.uk/iplayer/console/p00lc44c

If you have a listen it 2hrs 5mins!!

We have an article on BBC website too!!

http://www.bbc.co.uk/news/uk-england-stoke-staffordshire-15597654

So far been an exciting day, we held a peaceful protest outside the hospital with about 30 people attending to help prove that we're not going away and we will keep fighting for what we need!

Will put links for Midlands today and photos as soon as I have them!!

xxxx

Exciting Morning as Midlands Today Pop Round!!

http://cfunit.moonfruit.com/

Well the CF Unit @ UHNS Campaign is about to make it's appearance on TV this weekend!! 

This weekend the University Hospital of North Staffs open their doors to the 400 million pound hospital building and the first patients to move in are the respiratory patients!! So we've had a couple of banners done and we were planning just a quiet peaceful protest just to show the hospital board that we are not going away and are going to continue to fight for a CF Unit!

Seems that the hospital had also invited Midlands today down and they wanted the story to be about their new super hospital and the first patients walking in, but now the news want our story more!! Which is great for us!! Sad for the hospital! But hey they shouldn't of promised us a CF Unit for years and years and then taken it away from us without so much as a real explanation.

So Midlands Today sent a Camera Man and Reporter Lindsay Doyle have been to my house this morning and interviewed me and my partner in crime Chris Hall (CF parent) as the Campaign leaders and asked us why we need a CF Unit at the hospital!

I was really nervous in the interview, didn't know what to wear or anything, but like usual once my mouth opens the important stuff seems to roll off my tongue! Chris did really well explaining our need for a unit and all the hospital broken promises and mine interview was the cf perspective!

Today as a CF patient attending the hospital i've received a letter and i'm presuming all the other patients have too about the CF patients care been moved from ward 79 to the new ward 233.  It states that we will have 4 side rooms which will be fitted with additional facilities to improve comfort whilst cf's are inpatients and two of these rooms will be ring fenced for CF patients.  It goes on to say that the directorate team would like to apologise that this is not a dedicated unit that we were hoping for but assure us it will be a positive move for the CF service.

While all this sounds good and it's a damn site better that what we have been faced with previously on Ward 79 it a positive step and it's in the right direction and it just goes to show what we can get if we just fight for what we deserve! Back in June when we started this campaign the move to 233 was going to happen and adult CF patients hadn't really been a factor on their priority list, now since this campaign was launched, after many meetings that Chris and I have attended with Nicole and Stuart Sutton helping out too by attending meetings we have pushed for better facilities and quality of care things have started to change! They have held CF training days for the staff too, its just unfortunate that half our staff aren't guaranteed a job on our ward and will find out their fate in January next year as they will move with us on a temporary basis.

So we just keep fighting and we will get there, tomorrow the hospital hopefully will realize how serious we are about this campaign and if we have a good turn out of people to help us with our banners they'll realize there new super hospital ain't so super without a dedicated CF Unit for the super duper CF patients!!

The Midlands today TV interviews will be on the lunch time show! 12.10pm and the follow up in the evening at 5.45pm for the protest at the hospital.  Please watch us!! I will be watching myself under a pillow i think!! lol x

Chris and I will also be on Radio Stoke at 8am tomorrow morning (Saturday 5th November) 94.6FM

So tomorrow's a big day!! Lets hope its a success!!

For more information on our campaign visit http://cfunit.moonfruit.com/

xxxx

IV's Finished, Dnase Started, Lung Function Up! Woo hoo!!

Well i've been home for a week now for out of hospital last Friday, a week last Tuesday after my frustrations i was given an extra week of Iv's Ceft and Meropenim and the DNase was actually started!! The IV's have dried my little lungs up which is good, i don't constantly feel like i'm choking on sputum! The DNase i can feel is working because the sputum i'm now coughing up is a lot thinner!! I'm trying to drink my water, which is easier said than done to a Tea lover! But i am trying, I went back to work on Wednesday & Thursday so instead of my normal bottle of Coke i keep in staff room i took water!! So that's a start and i'm trying to drink water in the evening! My mouth is really dry because of the Meropenim making the Thrush in my mouth really sore.  But with the bottles of Nystatin as my best friend hopefully that will get better fast now the drugs have finished.  My lung function on Tuesday was for me a very exciting 42% the best it had been all year so i'm pretty happy with that just hope i can keep it up, i really felt the difference after 2 or 3 days of the Meropenim, fingers crossed this feeling lasts, i'd really like not to have any more ivs this year! I have so much going on, i'd just like to enjoy my life for a little while!!

I just struggle with this whole idea of Dnase needing to be had 1hr before you have other nebs and physio, i'm actually feeling the benefits of the Dnase around 8pm at night!! Other than this silly tickly cough it give ya! But Emma told me to take Piriton to help with that and it does actually do the trick!! My mornings when i go to work i was struggling enough to do my nebs and acapella, now with the extra hour before hand it's a routine of dragging my ass out of bed and downstairs for half 9 at latest in order to fit it all in.  I know some of you would be like half 9 wow what's she complaining about, that's a well good lie in, but i don't function without a good 9-10 hours sleep and when your awake most nights because of feeds or coughing it's hardly a restful nights sleep most the time.

For some reason my hospital won't give me an E-flow for my Dnase until i prove my compliance with the Dnase and also because i will only be using it for the Dnase because I prefer my Salbutamol and Hypetonic Saline 6% through my ultra sonic neb they said they couldn't justify the cost, against another patient who would use the nebuliser more!  My arguement to this one was well if u don't let me try an E-flow then how will i know if i prefer to have my other nebs through it too!! N also my friends Emma and Aaron both said that they were given the E-flow initially for their Dnase and then they started using other nebs through it afterwards!! So why not me!! Yes i'm not the best with nebs in the past, i hate the buggars to be honest, but now i've got to the point in my life where i can't just choose to do them when i'm not well, i have to do them on a daily basis to function.

I just wish that these nurses and physio's could live a week in our lives, a day wouldn't be enough! Then they'd realise how hard it is to fit all this in and find a balance to have a normal life too!! It's alright in morning when your biggest worry is what to have for breakfast!! It's so frustrating that they work with CF's every single day and still just don't get it!!

On plus side on 23rd Novemeber i'm going to Manchester, Wythenshawe Hospital to see Professor Webb for a second opinion on my care and medication!! I'm have 12 iv courses since Jan 2010 and i don't think they all been necessary, some i've had before holidays but they just don't seem to do much! It works out that every other month i've been on iv's and most of them have been for longer than the 14 days, some 3/4 weeks and once even 6weeks.  I know there are other CF's so much worse of with me but we all have to fight for ourselves at the end of the day and i'm hoping they can just look at things and try and give some alternatives to help me feel better and stay off IV's for longer! Fingers Crossed!! xx

Frustrated........

Well i'm still in hospital, been a frustrating few days!!

Last Tuesday my lung function after a week on Ceft and Col and 5 days resting in here with lots of physio and my lung function was up to 36 from 27!!! So after this good start i really hoped to reach my target lung function of 40%!! Last Tue my consultant saw me and put my steroids up to 30mg and increased my transamic acid and we discussed dNase, which i've not had since i was a kid, but my sputum was really thick! I was on fluids till thursday which helped loads, i'm not the best person at drinking lots of water, so my lungs are prob quite dehydrated.

Friday was Nat's funeral, which i must say was a lovely send of for a beautiful girl who deserved so much more from life, she had a baby pink coffin, which was so perfect for her, but it broke my heart to see! Her songs were;

Madonna: Like a Prayer,
James Blunt: Beautiful,
Claire Maguire: Save the last Dance for You and
Belinda Carlisle: Heaven is a Place on Earth

Four songs that every time they come on radio i'm going to blart at! Nat's mum Wendy told me she loved Like a prayer and heaven is a place on earth and used to sing them karaoke, even on her holiday in Tenerife she sang them, just 7 weeks before she passed! I'd never heard the Claire Maguire Song but now i have it on my laptop i've listened to a few times, not cried yet!! So that's good!! I've cried a few other times though! I sobbed all way through funeral, was so sad, words can't describe what it's actually like as a CF to go to a funeral of a friend who you know a few weeks ago was just bobbling along as normal, yeah not the best of health, but then one infection and their life is gone! To me i can't describe how much that scares me and scares me for my other friends around me! We all just have to continue to fight each day!!

So whilst i've been in here i've started an exciting project!! I'm designing a calendar to sell for my CF Campaign!! Apparently according to my TV guru Mathew Wright the other morning on the Wright Stuff "Meerkats" are taking over the world!! Well my mum and dad are both well into photography, have amazing cameras and had recently been to a local zoological park and taken lots of photos of Meerkats!! So my idea sprung into action and now i'm sat designing it here in hospital!! I'm doing this for the CF Unit @ UHNS campaign so i'm including photos of all the CF's that this will be helping and on the back page i'm including a memory of page of people who have lost their fight, who used to come our hospital!! I'm so excited about it!! So watch this space!! I'll be uploading photos of my calendar and details of how you can buy one!!  Hope you like Meerkats!!! :) xxx

Back to my health, over the weekend my chest started to get really tight, this at first didn't alarm me as after a week and half colomycin IV i have a tendancy for my chest to get bit tight!! Saturday it was just tight but when i had my afternoon physio i had pain in my airways when i coughed!! That night i kept waking up with an uncomfortable pain and by sunday morning i work and my airways felt like they were inflammed!! So I asked for a doctor come see me and they stopped my Colomycin and put me on Ipratropium nebs which i had asked for earlier in the week with my consultant but he said that we'll just see how i go over the next few days! He says that alot, which is why i get so frustrated with him, he rarely makes changes straight away when you come stay in hospital!

So Monday my airways were feeling bit better, but had really bad chest pain on my right side, so he wrote me up for some different painkillers, but seemed to think that me staying on one IV just the ceft would be fine until Friday. He wanted me back on fluids to help with my chest been tight because i had had two physio's and not been able to shift any crap off me chest, and said that if i went 24 hours without any streaks of blood in my sputum then he was happy for me to try dNase on Tuesday.

It's now Tues and I did my lung function this morning, 34%, wasn't very impressed, but i kind of expected a drop with my chest been tight, least hopefully now he would realise i needed more than just the one IV.  I also had my dNase trial, my physio thought from my lung function results that they wouldn't allow me to have it again, but Dr Lim has said it's ok! There was a drop in my FVC by 20%, quite a lot to be honest, but he happy for me to continue because with how thick my sputum is he thinks i really need to give it ago.  He also listened now about the IV and I'm on Meropenim with Ceft for another week, but hopefully home on friday and then can have a few more days of IV's whilst i get used to normal life again! Plus i have a Halloween party to go to!! I have paid alot of money for me outfit! But it's well cool!! :)

Didn't go home tonight, it's been a tiring and frustrating day, still on me fluids too! I just hope this extra week helps, my chest is less tight today! I hope the dNase helps too, it didn't when I was younger but I my lungs have changed so much over the last few years that I'm hoping it helps!

So fingers crossed for a better for few days, cuz right now i'm wondering why i came in here, i've rested, had physio twice a day with percussion, cleared loads of crap, not gone to work and had all my meds and still i'm going round in the same circles as i have been going in whilst i've been having all the IV's at home!! Least now they can see it I guess with there own eyes! Although I feel like I have to prove everything to them!

It's not easy been in hospital as all CF's know, i'm in here with the two people who I see as been like a brother and sister, Aaron and Emma! x They keep me saine to be honest! The three of us went to Nat's funeral all together with my Steph, they were my rocks that day and they my rocks at the moment whilst i'm in here! I'm so ready to go home now, so friday better role on fast, i'm missing Steve and cuddles with my puppy!

xxx

I feel guilty sometimes that people can't always see that i'm ill but i feel like a bag of shit!

As i sit here in my hospital bed, drip connected, in my pj's with greasy hair n stupid little spots on my forehead n upper chest from the Ceftazadime i can't help but think about how really invisible CF is a disease! To look at me u would think that earlier this week it was probably the worse i've felt with my CF, struggling so much at home, i've let myself be admitted to hotel 79 at UHNS. 

I haven't been in here for a year which you'd think is pretty good going, but i've had that many home iv courses its a little daft! Since January 2010 i've had 11 iv courses, which is pretty much one every other month! I only finished my last iv course on 21st September and on 11th October i'm back on them feeling like this! I don't like to whinge to much to be honest, but this last week was an eye opener to what life could be like and i'm just not ready for it.  

For along time i've got away with not needing physio or nebs and just doing them as an when required, now i need them to function and it's hard for me to except really.  My little lungs have really struggled over last few months and it's so hard to explain to the people around me.  I wake up, i put my make up on like every other girl and you know make up really does work, it helps hide away the pale face I wake up with, then dry shampoo wow that was the best invention ever, no need to wash hair everyday just spray the greasy away!  

People don't see it on my face that i'm ill, n they can't see my lungs! They can hear me, i cough sometimes and I don't even know i've coughed!  The amount of times i'll be at work and people say "ooo that sounds like a nasty cough" or "you should be at home in bed" n I don't even know i've coughed.  Sometimes i feel like i need to have a good old coughing fit n get the sputum flowing for people to see what's it's like, but that's something you become great at hiding too! 

I take my Iv's everywhere with me, people are so used to me injecting them now, they don't blink an eyelid! For me to end up in hospital for me it's a cry out for help, i've gone round and round in circles at home and been getting know where! On friday at the hospital the cf team could tell i was struggling, i guess they see us differently to others, either that or we don't need to hide it all as much here! I don't put as much make up to come hospital that's for sure, i normally just crawl out of bed n throw clothes on n bit of foundation n eye liner n fall into my car! 

It's hard when people can't see it to explain it, we all get them silly looks when we pull up in a disabled space and get our car n walk off, people so thinking we're not disabled, when to be fair we looking at the person getting out the next car thinking exactly the same thing and looking to make sure that they definitely have a sticker, especially if i've had to walk further because they stole space!  

I guess i struggle and kind of feel guilty sometimes, for looking ok but complaining about feeling like a bag of shit but yet i'm still carrying on with my everyday life, pushing myself to go work and go out and carry on like everything is kind of ok! Does that make any sense! 

I am really lucky there are only a few people in my life that i get frustrated at for not understanding my world, everyone around me really tries, i just wish it was easier to show people sometimes!! 

Actually maybe this will help!!

Here are a few photos of me and my treatment!

My morning tablets!! 

                             My Nebs and Acapella                                      My Overnight Feed

My peg connected up to feed and doing my insulin!

My Evening Tablets

All this is stuff i need to do or use every day to function, then when your ill you add in the IV's 3x a day, for me who is normally miss independent, it all just came too much this time! 

Steve is great and really will do anything for me to keep me well, but he works and at the end of day he can't do it all! So that's why i'm here, to get rest, cuz to be fair it takes me coming in here to even get me to ring in sick at work, in the last year since i was last in here, even though i been ill and had all them home iv courses i had only had one day off sick! 

So here I am resting, still on me drip to re-hydrate me, think this is to keep me on a short leash, only place i move to is the loo and that's pretty often when your on a drip, i'm bloody weeing for England! 

I hope my lung function has improved and all this hard work with physio over the weekend pays off because my ribs honestly feel like i've been through 10 rounds with the physio.  I haven't had percussion for years and it's never worked like it has been doing this last few days before! When i was a kid physio used to say how frustrating it was doing my physio because they felt like they were doing nothing, i never used to cough anything up, but that just goes to show how much my lungs have changed because now i'm so productive and so full up with crap i hardly know what to do with it, clearing it is hard work, it becomes easy to just do what u need to do to function, so you can get on with life, rather than pushing that little bit more to keep shifting the crap! i'm kind of surprised but not surprised by how much i've bought up this last two days in here, but then the other part of me isn't, but i really need to get it all up and hope my tap doesn't turn back on and fill it all back up again for a long while! 

I'm gonna do my nebs now, then its feed and bed me thinks! Problem with been in here sometimes, u don't get tired just sitting around resting, where at home i would be in bed by 10 and asleep by half past! Here i'm just awake! But i'm saying night! N i'll update you soon! 

Catch up time!! Sun, Sea, Wine and Weddings n I end up in Hospital!

The point when you know you need to rest, but life goes on and your not ready to sit around and just watch it!!

To say this last week has been difficult is an understatement.  I had an amazing holiday in Cyprus and really didn't over do it, but it just seemed to take its tole, then work was very stressy for the first 3 days of been home and so when thursday last week came and i finished my shift at work my body just gave in!!  I had planned to go with my friend for my first gym experience, because it's a little scary going alone, but there was no way my body was gonna let me.  I came home and sat on the sofa, n that's where i stayed all night.  I knew IV's were on the card, i'd already upped my steroids to 20mg and put myself on Cipro, Dr Jo (me) is very good really at prescribing, but you know sometimes it's just not gonna be enough.  I should of rang friday morning to book my IV's but wanted to rest and just give the Cipro n Steroids a chance.

I was looking forward too my weekend, Friday I was going out for a curry with Steve and his friends for his birthday, so I spent all day in bed, just a little trip out to get my nails done, needed a little TLC! :) I got ready and actually cause i'd had a lot of rest felt ok for the night, i drank a whole bottle of wine, prob not the best idea, but sometimes i think CF is enough to turn ya to drink n hey think of the calories i packed away! Curry and a bottle of Wine!! hee hee, i can justify everything.

Shame I couldn't justify it in the morning, till about 2pm i stayed in bed, resting, n when the hangover wore off, i still felt crappy with my silly lungs.  Steve was pretty hungover too, so we had afternoon on sofa watching Flubber of all things, you really know you feel rubbish when you watch them kind of films.

Sat night was Gem and Gaz's Wedding Reception at home, it was for their wedding that I went to Cyprus, which was amazing day in Cyprus.

 

I went on holiday with Steph my best friend, we had a lovely time and staying in a lovely hotel with breakfast to die for, i'm still missing the pancakes every morning now, its just way too much effort over here to make them for breakfast.  I ate really well on holiday, put nearly a kg on, normally i loose weight on holiday cause i'm not doing my feed.

So Sat was the wedding reception at home and eventually i found the energy to get ready, was a little late, but least i made it, it was a struggle, i knew my lungs were been pretty naughty.  On the night, i decided to drive, a few cokes n i had some energy, i do like the dance floor, but i had to just dance to songs i really liked, i had created a new dance, the chest pain move, one hand holding my lung n the other doing some crazy move! Had a good night though, even though it was hard work.

Sunday i had planned not to do or go anywhere, my phone vibrated and then started to ring, but i ignored it, then i rolled over just to check who it was, it was 10am so it wasn't that early but i was still tired.  It was a message and missed call from Gem and a message.  The message that read "Nat has passed away".  I sat bolt upright and hit the call button! We all knew Nat was really poorly and we all know how cruel CF can be, but i guess deep down inside you hope for that miracle.  It was kind of an expected shock, the whole time i'd been in Cyprus, i'd been checking facebook and sending texts.  When i got back life distracted me a little from been so on edge which i think it's why it was such a huge shock.

Me and Nat had a strange friendship, i guess you'd say we were CF friends, not really talking about other parts of our lives, more about the IVs, lung function, feeds and just the general crap that goes on at the hospital, she was a very private girl, not like me i broadcast my CF way too much sometimes.  Why i can't just answer the question people constantly ask with a "Yes i do have a bad cold/cough" I don't know, instead i'm like "Oh I have Cystic Fibrosis".  I wouldn't say i'm looking for sympathy, cuz i don't like that one bit, it's just i've never hidden it.  People tend to know me for an hour n they know i have CF, i've normally coughed n they comment or its just come up in conversation! I find for me it makes life easier, i know not everyone is so open about it! I think it's just the way i've been bought up, at school all the kids knew i had CF made it easier when i had to scoff all me treats, drink that horrible orange juice with maxijul in and stay in at dinner time till i'd eaten all my dinner, god dinner ladies r crueler than kids!

So this week has been a struggle, i knew i needed IV's so tuesday i started Ceftaz n Col at home, my lung function was an all time low again of 27% which kinda scares me, i'm not ready for my lung function to be that low to be honest! Its was 37 before i went Cyprus, so the 10% drop quite a lot n quite fast!  My lungs were filling fast with crap n mornings getting out of bed in the morning to go work was a real struggle, i was coughing my guts up just making it to the kettle to get my much needed cuppa tea, then puffing n panting back up the stairs with it to do my ivs, nebs n get ready! I was nakered by time i was ready!!

I've even had a trip to walk in centre as i thought i'd got a UTI, i went loo 3 or 4 times at work n was a reddish ting to me wee, they tests my wee n said it was clear, no infection, bit protein but no blood but it looked like blood shud be present.  I had kidney pain too in left kidney, so yesterday i my day off i dragged my little ass up to the hospital to get checked out, my wee still a mystery, still same results! Turns out though after a little brain wave from the SHO that i've actually been eating too much beetroot!! Yes beetroot makes ya wee red, it's a no brainer really!! Quite funny, but quite relieved it was just the beetroot! lol! It's my nan's fault getting me addicted to Cheese Spread on Toast n Beetroot Salad on top!! Weird yes i know, but don't knock it till u tried it, i been eating it every day for breakie! I find breakfast the hardest meal to eat, i tend to have fads on something, eat it constantly everyday for a month then i don't know what have when i'm bored of it, so i'll have a week or too eating bickies for breakie before i find something knew to fad on!!

The docs decided i needed come in especially after i told i really was struggling at home, i've not been in here for a year! But here I am, i've been on drip for 18hours so far, peeing like a trooper, so annoying when u attached n need a wee!! I think i really needed to come in, i've cleared loads with physio today, not had percussion for years i swear i'm gonna wake up battered n bruised tomorrow, she really pummeled me!! But guess it's worth if if can sort these lungs of mine out!

I've had so many iv courses this year at home, n i'm so tired of them not working properly or me only feeling better for a few weeks!! I hope this time i really do sort myself out, or they sort me out, at home it's so hard sometimes cuz it's all on you to make urself better!! So i'm gonna rest, let someone else pump drugs in n let physios treat me n be a good girl for a change, just hope it works!! :) xxx