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