65 Roses?....A beautiful way of saying Cystic Fibrosis, however does not make CF any more beautiful. My wish is to be standing untarnished, unbreakable, breathing easily.... A blog that is about my day to day life, as well as trying to cope with my illness Cystic Fibrosis. There will be no hold backs just me...out in the open, hope you enjoy! xXx

Monday, 18 July 2011

That dreaded call

I find it really hard to call my team and 'admit defeat' and accept that i need medical intervention. It feels like all the hard work i have been doing was pointless and i will be looked upon as non-compliant with my treatments if i have ended up in hospital. I know this is a completely unjustified feeling as my team obviously know infections will happen regardless. But i hate asking for help, so i put off ringing my team to book a bed to go in for as long as possible thinking im superwomen and will manage to fight the infection through sheer determination, if only it was that simple :/ ....so anyway i phoned a while ago and told them my symptoms, they said i will need to go in, they will try to get me a bed asap, surprise surprise!!
So today is the mad rush to get things in place for my admission, making sure i have enough clean clothes and undies to take, getting some food to go in with, make any necessary calls. And of course meet Clare for a Starbucks before i go in, its going to be a long hard day but its almost a relief knowing i will be getting the medication i need in the next day or 2. I'm not sure if i will be able to get internet in hospital so i may not be able to update my blog so i will hopefully update in about 2 weeks once im home...until then, take care

Thursday, 14 July 2011

Imagine this.......

Imagine the worst cold you have ever had, you know the ones where your nose is so bunged up you constantly feel the need to blow it, the difficulty you have trying to get it out, real sticky snotty mess!!....well imagine that never ever goes, everyday walking around with tissues in your handbag hoping that one day you can just blow your nose and 'breathe deep' through them nostrils, its what there there for after all. But instead of it getting better it gets worse, it would be pretty awful really..wouldn't it??.....

Imagine running the fastest you could possibly run, heart racing adrenaline pumping and making you push push push yourself to the finish line, once you get there what do you do, you relax and take huge breathes through your mouth and feel the heart rate coming down, the endorphins giving you that happy buzz from just achieving your run, your heart rate is back to normal now, you feel better, you smile...Now try this run again only clamp off your nose and breath through a McDonalds straw only, when you get to the finish line keep the straw in your mouth and try as hard as you can to get air through the straw, you wont feel happy, you may feel panic, maybe even fear that you cant breath like your lungs are failing and your heart is going to explode, record the difference in time it takes you to recover...this is my life!! only im not running i just walked 10 yards to the car, im now sitting in the drivers seat gasping, coughing,sweating, panicking.
So if you see me pull up in a disabled drivers space and get out, take a minute before you judge me thinking silly young girl is not entitled to park there lets go and tell her so....
YOU DON'T LOOK SICK!!!! No I don't. It's hard to explain to someone when they have no clue. It's a daily struggle feeling sick on the inside while you look fine on the outside. i have an invisible illness ...Cystic Fibrosis. Don't Judge.

Wednesday, 13 July 2011

First Day

So as promised i will now start my blog, i guess i will just tell you about my day...
My chest was playing up last night i coughed until 2 o clock this morning and threw up twice. resulting in not sleeping till 3AM, this isn't uncommon in my world (so those of you who call me lazy, maybe you know why i sleep in until 10AM Most days lol)
However i had to be up at 7am this morning to fit in my hour and a half daily routine of medications and physio to be at the London Chest Hospital (LCH) for a physiotherapy appointment at 11.
Had a very good session, discussed with my physio Pam what i had been up to physio wise over the past week, she was thrilled when i told her i had ridden so many miles on my bike, that will sure make a difference on my lung function which is scheduled to be done next Friday in my outpatients appointment. It was 50% when i was discharged from hospital in may so lets hope i have managed to improve it or at least and more realistically managed to maintain that number with out the aid of IVAB'S. I will be more than happy if its stable but deliriously happy if it has improved even by 1% as every little part of my lung that works will give me a better quality of life :)
From the hospital i met My best-est ever friend Clare in town for a nandos lunch which was gorgeous!! I got home around 3PM and am so tired from a restless night, early start and a long drive as well as a large lunch :) So i am going to have a lovely hot bath a cup of tea and get an early night...will speak to you soon, take care :)