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

Thursday, 30 January 2014

A new life

Something i have often wondered about as a sufferer of CF is how it affects our friends and family.
I have often touched upon it in previous blogs such as "my sisters keeper" & "Through a mothers eyes"
But just recently this question seems to be swimming around in my mind again, after a situation was bought to my attention.

As a women, i can understand how amazing the news must be when you are expecting. Having never heard this news personally, unfortunately imagine is all i can do.
I see deliriously happy couples wandering around mothercare as i wander around with my friends as they expect their babies. All picking out their babies 'leaving hospital outfit, a selection of size babygrows for the hospital bag, The perfect Moses basket and the up to date tehnology to monitor the precious life they have created.  On the outside everything appears so 'normal'

Through the pain of giving birth, a mother will always say it was worth it just to hold the young life, to meet their child.
The euphoric moment when the physical pain stops and is if by magic your baby is in your arms.
Once the physical pain has subsided have you ever thought there may be an emotional pain so fierce it puts childbirth to shame?
A pain so deep rooted, you fear it will never stop.
The pain i speak of is hearing the earth shattering news that there is something wrong with your baby, something no one person can fix. Not even a Doctor with whom we place so much trust in their knowledge to cure anything placed before them.

Imagine hearing the news that your baby sufferes from Cystic Fibrosis.

Two Words you more than likely have never heard off, do not understand, unable to comprehend what the doctors words are saying, words falling on death ears as you look at your baby and question the fate and mortality of the life you have just bought in to the world.

My parents heard these words back in 1987, the outlook was bleak.
"She wont see her fifth birthday Mr and Mrs Robinson. Im sorry, there is nothing we can do"
Tears falling in a room so quiet they sounded like rain in an ocean. The first few tears that would be shed over the years, enough tears infact to fill an ocean. 

As a sufferer i feel i sometimes, that i cope much better than my family. They grieve the life they expected me to have, i however do not grieve, how can i grieve something i never knew.
My life is, and always has been this way. I have never known a full breath so how can i miss it. How can a blind person miss the sun if its never been seen.

Each time i was admitted as a child i would see my parents upset, but never understood it. I was going to that cool place where i didnt have to go to school.
 I got to sit in the art room all day being creative and playing with the other children. I always had lots of people come to see me and they always had sweets!
That tube in my arm, well yes it was annoying, but it only hurt when the nurses put medicine in it, but it was ok, i dont know why people cried so much.

I sometimes think the naivety of a child is precious.
I wasnt aware of the facts i just saw a lot of upset.
I never knew my prognosis.
I never knew of the annual meetings my parents had with health care teams discussing my life and my options, nor was i aware that with each year i got older the science and technology behind cystic fibrosis got wiser. Better. More widly recognised. More researchers on the case to make CF stand for cure found!  

2014...ok so CF doesn't stand for Cure Found, but it no longer is a death sentance to newborns, infact it is also no longer a death sentance for some people of my generation.
With drugs like Kalydeco widly prescribed, and phase 4 trials of vortex coming up we have every reason to be positive.
The sheer diagnosis in itself has come on leaps and bounds by being included in newborn heelprick testing, some babies are diagnosed and receiving some amaxing medication before they are even showing symtoms of the disease. 
Im hoping that parents worldwide as well as the young couple i know of, are being told in a much gentler and more positive way about their childs condition, softening the blow if you will.

I am not in denial that CF is still currently an incurable illness, nor blind to the fact that it is still a tricky and difficult condition to manage. It does have hugely turbulent times but with all advances aside, one main thing newborn sufferes have now....is HOPE! 

My aim is still to raise awareness of the disease, without awareness we will not achieve the strides we are hoping for, simply through lack of funding in to the research required.

Im hoping i will continue to be supported in my fundraising efforts, but i ask you for another favour.
To keep in my mind the people that are recieving the news that their baby is a sufferer, bear in mind how it would feel should it be your child, your niece or nephew, granddaughter or grandson.

Thankyou for reading and please feel free to share to raise awareness and make CF stand for CURE FOUND!!!!!

Thursday, 23 January 2014

Is happiness the key to success??

A question i have often asked myself.

Now i hate to be completly mooshy, but it seems in my case happiness is the key.

I am currently sat in an outpatient clinic with my team and im getting consant remarks on how well and happy i look.

I have colour in my cheeks, a few extra pounds on me, and low and behold, just blown the best lung function i have in over a year! 41%

I have always been more than honest with my team on my adherence to treatments as well as how easy or tough i am finding them, so it was no shock to them to hear im still having troubles with the twice daily antibiotic nebulisers.
For years i have tried to find the reason why i find them difficult, yet taking the other 3 daily nebulisers and 2 inhalers a breeze. Although still a mystery to us all, they were pleased to hear my general activity levels have improved. 
When you feel ill, are unemployed, lonely during the day and bored of the constant struggle and upkeep of the daily treatment regime its far to easy to roll over and go back to sleep. Sleep allows you to forget things for a while, a peacful place where Cystic Fibrosis seems to not exist anymore.
Yet however at peace you feel there is, somewhere, in the subconcious is an awareness of what you are doing to your body, starving itof nyutients, vital treatments even daylight, and that peace is soon shattered once you wake t find yourself feeling worse than when you initially layed down. Chest heavy with sputum, stomach rumbling through hunger, body weak and tired frm lack of vitamins and dehydration.
Unfortunately this is how i was for a long time. But thanks to a lifestyle change and meeting somebdy i can honestly say is my soulmate my life has taken an amazing turn. A turn for the better.

When you have somebody in your life that is able to make you see that there is more to life than hospital beds and ill health its amazing how it can change your mindset. I have plans i want to achieve with tom, we want to buy our house, go on holidays and experience life together.

Although cf will always be there, it does feel it is a smaller part of me as apposed to ALL of me.
This is clinically, the wellest i have been in 18 months. I have managed to not only reach my goal lung function of 40% i have beat it.

I started this blog last wednesday whilst i was in clinic. The discussion of allergy testing was bought up as a drug i was thought to have previously reacted to is something my team are extremely keen to restart. Well actually there not entirely sure it was this drug, it is believed to have been another i was taking at the same time time, and statistically the drug they now wish me to have is one that you are less likely to react too. The drug in question is one called colomycin and although its "an old drug" that was developed years ago it is still oone of the best on the market for the particular infection i have, so we are all keen to restart it as it coukd boost my lung function even further. Today is the test, and im just sat waiting to be seen so fingers crossed, should the testing go to plan i will be restarted on it next week.
Also i needed a follow up blood test as my resukts foor my vitamin a&d was very low despite being on 4 supplemental tablets a day. Having good levels of these vitamins is essential in CF as they can not be absorbed through diet alone. They help maintain good bone health, which is very much needed as cf also affects bone density, resulting in arthritis, osteoparosis and broken bones.

Apart from that, all is well, so fingers crossed for good results today