Thursday, 22 March 2012

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.

No comments:

Post a Comment