Wednesday, 7 December 2011

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

1 comment:

  1. Hey sweetheart you go and do what you can to see if it may help you more , give this a try and go for it hoping and praying for two things1 . that you feel better soon and 2. that you find out clearly if Wythenshaw is the rite place for you xx love Ange Krystynas mum xxx