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, 18 September 2014

The Stalk

It's been a while.
I guess all my thoughts have been under control recently.
My blog is my outlet, weather it be good or bad, somewhere to spill the overflowing thoughts.
I guess it's time to spill.....

"We dont think you can have children"....a sentance no women ever wants to hear.
..Especially when they actually ovulate and have viable healthy eggs.

Cystic Fibrosis, yet again has put its ugly head in the way of 'life' not just mine, but my partner toms and our child who has not yet been conceived.
I have all i need to create a life, but to maintain that life and carry it to term is another story. With my deplieting lung function and lower level of oxygen, how could i oxygenate a baby, keep it alive...and myself alive too.
Well there is no guarentee i could do either! 
it could go one of 2 ways, i could have a miraculousy amazing pregnancy where myself and baby would be well, no complications, no adverse effects, perfect baby and mother... or, and unfortunately the more likely of the 2, it would be the hardest and quite honestly the stupiest thing i could do.
 I want a baby, but at the cost of my own health, my own life? I'm not to sure.

The baby would take what it needed regardless of what the body that it is growing inside of needed.. Calories, oxygen even the toxic drugs i take to survive would be split with baby.
Could my lungs, or more to the point, the less than 1 lung i have cope with the strain of carrying the weight? Probably not.
An average of 20% lung function is lost during pregnancy and there is no guarentee it would be regained, so 20% is what i would be left to work with. 10% lower than the recommended transplant stage, i would have my baby, but at what cost? A life reduced to being in bed, in a wheelchair, wating and preying for donor lungs with uncertainty. A motherless baby, a man without his partner. Left to raise a baby single handedly because of one womens selfish need to fullfill the empty yearning that a childless women has to bear.

Tom wants to be a dad, he would be an amazing dad, but to be a dad and sacrifice the life of the women he loves, in his eyes is a no brainer. He wants me and i want him, so the grieving process for the child we will never have had to begin.
We can, and already do, have an amzing life just the 2 of us, we have nieces and godchildren as well as friends with babies, so that will be our life we have to accept that...for us to have a child could be the ultimate sacrifice to my life, A sacrifice we are not willing to make.

If only a stalk dropped a baby off we would be fine, heard of the saying "have your cake and eat it too?" well that would be us, we would have our baby, our family, my health and our future.

So i guess this is the part we tell you we have a stalk....well as good as.
We have 2 genuinly selfless, strong, and amazing people in our life who have offered to be our stalk...our surrogate. 
My egg, Toms sperm, our biologocical child.
The future we want, all because of 2 selfless people who have offered there bodies for 9 months.
We have the ingredient for our 'bun' we just need a proverbial oven.

We have choose to keep the identities of both our potential surrogates a secret at this time, both will need to pass a medical, and the better candidate will then start treatment along side me to sync our cycles.
Myself or Tom will never find the worlds of gratitude to these people, but to know there are people in the world willing to give a couple such a gift is humbeling. 
2 women are willing to make our dreams come true.... why? Just to see the people they love happy and complete.


Our surrogacy journey has begun <3 

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 


Wednesday, 25 December 2013

Christmas :)

So today is christmas and things are fantastic

I'm currently sat at my dads house having a sit down after opening all our presents, and there were so many, we have all been spoilt rotton!!
I writing this blog on my new keyboard for ipad that sara and ben brought for me, much easier to write with :)

Our festive celebrations started yesterday at sara and bens house for our traditional hot pork and apple  sandwiches, hot buffet and drinks. This year i baked 24 mini Victoria sponges which went down quite well, everyone said how light and spongy they were so i was happy :)

Today me and tom woke up, had a cup of tea and prepped the turkey then opened our presents.
Dinner is always at my dads so i cook the turkey at home, ben does the beef at his house then we all meet at dads to open the presents to each other and cook the potatoes and veg.

Im finding recently that adrenalin seems to keep me going through things, I seem to switch on autopilot then crash after the event, which is what happened with the fundraiser. It took me a good week to recover then the christmas prep started.
Me and tom are at his parents in kent for Boxing Day and im sure that once the 27th has arrived ill be ready for a rest.
As time goes on i am finding that im learning to listen to my body slightly better.
Yesterday after i was on my feet for a while baking i was tired out so instead of pushng on, i lay down for a while for my body to recoup before the evening.
Same as today, usually im head chef, well at least i like to think i am, much to ben and my dads annoyance, we all like to think we know best ;) I cooked the turkey this morning and now i am resting and actually allowing someone else in the kitchen for once, yes i can admit im a kitchen bully!!! However im sure the meal will still be lovely without my interference haha.

To say a few long days on a trot isnt hard would be a lie, but i want to do exactly what everyone else is doing today, be happy, feast on food, watch films, be with my family and take lots of photos for my memory books.
I am a real sentimental old fool and the gifts that mean the most to me are usually the ones that cost the least, yet have the most value to heart. 
Photo albums already full of pictures, notes, ticket stubs etc. Sara and ben obiously knowing that and knowing me so well have bought me a large "family" photo frame and have filled it with pictures of the family, i think i can say thats actually my favourite gift :) thats not saying of course that/i dont love the clothes, bag, shoes, perfume, smellies or anything else for that matter, i have been truly spoilt.

Days like today really make you value what you have and who you have, and i have the best family anyone could ask for.

“Gratitude means to recognize the good in your life, be thankful for whatever you have, some people may not even have one of those things you consider precious to you (love, family, friends etc). Each day give thanks for the gift of life.You are blessed” 
― Pablo

Merry Christmas Everybody

Sunday, 15 December 2013


I feel I'm very much stuck in limbo at the moment.

Medically I'm 'too well to be listed for my transplant' 
Thanks to a huge shortage in donors the window of opportunity has to be just right, not to well but equally not to ill.
On average people are sent for assessment between 35-30% lung function. My average I guess is 32.5 at best 35 at worst 28
However there are times I can go without oxygen, although very rare and i do stillI have some quality of life. But I'm increasingly feeling my quality of life is not as great as I would wish.
I'm finding I'm feeling exhausted more and more. Now I don't mean tired out, I mean exhausted.
I went to the town yesterday with Tom to do the last of out Christmas shopping. 
I opted not to use my wheelchair as that is sometimes more stressful, as trying to get in and out of aisles that are far to small, in a swarm of manic shoppers is no mean feat. Anyone that knows our town centre will know the distance I'm speaking of when I say I walked down from eastgate car park, to Starbucks to sit for a while and have a coffee, then on to boots, the works and primark. 
As I was walking back through eastgate to the car I was feeling increasingly tired, it felt like my legs physically couldn't carry me any further, my feet were like lead weights and my knees were buckling just trying to keep me going, it felt like someone had struck a match underneath my coat because the burning from my back was so intense where my muscles were screaming to rest, it felt as though I had run a marathon or done a hardcore gym workout every bit of me was worn out.

Now me being me, won't give up and I know I push myself far to hard but I refuse to give in, so I insisted Tom drove us to the garden centre, I managed to drag myself round a few aisles before I knew I couldn't take anymore. I needed more fuel so I upped my oxygen and we stopped for something to eat before stopping at pipps hill so I could buy a new blanket. (An essential in this weather) 

Last night sleep couldn't come quick enough, I was in bed and asleep by 10, which is where I stayed, soundo until 11.30 this morning.
I knew pushing myself yesterday would mean a tough day today, but when I woke up I had an intense pain in my lower back. My airways so irritated and tight, not to mention full of sputum from lack of physio yesterday evening that I coughed non stop for an hour, a real stomach retching, painful cough that was just going on and on. When I cough like this it feels like its never going to end, gasping for breath between coughs that are making me gag. After what seemed an age, i managing my inhalers and taking some strong pain relief I drifted off again untill 2.30

It's my friends babies 1st birthday today, and I was supposed to be there at 2.00. But with how I was feeling, aside from being late I was sure I wasn't going to make it at all. But somewhere determination struck to get out of bed and go and see Ava. I didn't want to miss her first birthday, and hate being a let down, so with toms help I showered, dressed and got out the door. 
When we arrived natalie (Avas mum) told me Ava was ill herself with bronchitis, which meant that A. She was too poorly herself to enjoy her party and was put to bed, and B. even if she was ok to stay up I couldn't have gone near her as if I had caught her infection I would have been in hospital for weeks right in top of Christmas.
 It's funny that I could see the best place for Ava being poorly was in bed, yet I don't apply this practise to myself, I do wonder if I should pay more attention to my body and give it what it needs, instead of pushing and pushing. Maybe one day ill learn.

But another thing today that reiterated to me that I'm not the norm, was when i arrived at my dads.
My dad, bless his heart is a useless shopper, so each Christmas me and Sara set up an online basket of things we want, clothes, shoes etc. 
Sara was there before me as I stopped in Natalie's for a while so she had already started her basket. She had some amazing 6 inch heels, and some gorgeous, designer going out clothes. I sat for a while watching her get excited and felt a little pang of loss for how I used to be. To say I loved going out would be an understatement, I used to love clubs, getting dressed up, dancing the night away, seeing my friends, seeing the sun come up as we left the club and dare I say it, loved the feeling alcohol brung, a side of me I know I won't have again.
When it come to my list, I crave comfort, soft pyjamas, flat practical shoes, oversized jumpers that won't show I'm not wearing a bra on the days they restrict my breathing to much. I felt I wanted to order some killer heels and an outrageous dress but what good would they be to me. Maybe just more of a torment of what I can't do anymore. 
I'm so thankful I have Tom as he has got to the stage in his life where he doesn't enjoy drinking or clubbing, so thankfully we have found things we enjoy together. We are restricted on how much we can go out so we make the most of the things we can do when I'm having a good day.

I worry that a lot of the posts in my blog are about the bad side of CF and although its not what I Intended it to be, I do find my blog a great sense of comfort when I'm feeling frustrated. I'm not very good at talking about how I feel and if asked I will always say 'I'm fine' but my blog is a place I can release what is tormenting me, without actually having to speak the words or come up with answers to questions. 
Its a release and my mind feels clearer once I have emptied the thoughts.
I find when times are good I bask in them and live as much as I can, I almost don't have time to write as I'm busy...to an extent, living! 

Limbo is a tough place to be when you know things are not going to Improve.
And yet getting iller, in the long run, is essentially what will make me weller, as I will qualify for a transplant and hopefully have a much better quality of life post transplant.
Some days I wish I was listed for a transplant now as I could see light at the end of the tunnel, but by doing so am I wishing worse health on myself? 
Some days are easier managed than others but on the tough days it is very hard not to wish for better health. On better days I am thankful for the health I do have, and thank my lucky stars I am in fact, well enough not to need a transplant, it's a very fine line sometimes between the good and the bad.
But I guess we all have to take the rough with the smooth.

Wednesday, 11 December 2013

After the fundraiser :)

,Well it's over, the fundraiser is done and dusted, but what a turn out we had.
Our aim was to raise £500 which would go directly to the cystic fibrosis trust, how this money would be spent would be at their discretion. But I have asked if it could be put towards gene therapy.
The trust at the moment are funding gene therapy trials, the aim is to replace the faulty gene in a cf body with a corrected, albeit artificial copy of the gene.
In another blog I will go on to be more specific about the facts and timeline so far of gene therapy but for now I want to fill you in on how our £500 target was smashed through as we went on to raise a staggering £1200!!

I say 'we' and 'our' because I want to draw attention to Leanne. A friend that helped me to organise the event. I feel as I am the sufferer I'm getting all the credit, when infact Leanne done as much, if not more than me to get the event to the large scale that it did. 
I obviously wanted to raise awareness and money to the trust, who they are and what they do, as its something I suffer with and is close to my heart, but Leanne choose to go on this journey of her own accord with little to benefit from doing so. I, if around for long enough, could benefit from life saving treatments but if I don't I would like to feel I made a difference to the cf community by fundraising as much as I can. Leanne would not benefit in a direct way, just safe in the knowledge that with her determination she too made a difference. 

We spent 3 months in total planning and arranging things, we have had many laughs and many tears together, but thanks to our vigorous planning and advertising we had a fantastic turnout.
We had the privelage of having Basildon coral society choir come and sing for us, as well as a fantastic singer on the behalf of effective entertainments.
We had Santa, mrs Claus and an elf donating there time to the grotto, giving out presents which were donated to us by hobbycraft. 
A large cake stall, selling cakes that were donated to us, as well as teas coffees and different flavoured juices.
We had a children's corner where they could colour, play with toys, decorate their own cupcakes and make their own Christmas cards, again all of which was donated. We even had a face painter give up an afternoon for us.
Not to mention independent Buisnesses who came along to sell there goods, which added great variety to our shopping corner, everything from homemade cards, jewellery, Christmas gifts and sweets.
The most amazing stall was our raffle prizes, all of which were selflessly donated to us from friends, family and local Buisnesses such as, Ava grace gifts, The Circus Tavern, Sport and Star autographed memrobelia, Canvas city prints photoshoot and meal options from fish and chicken and nandos.

When I embarked on this first fundraising challenge I had no idea how much people would care about the cause, the support has been phenomenal and It will be the first of many fundraising events myself and Leanne will be doing. We already have plans for a charity football match, which a few top London clubs have offered to help with...but I won't give to much away just yet..lets just say the yids and hammers may be very happy ;) 

After that, which we are hoping will take place around may, we will have a summer fete, bouncy castles, BBQ, ice cream man, outdoor games such as 3 legged races, welly throwing, shopping stalls and some fantastic entertainment throughout the day. So I hope people's support will stretch even further.

I wanted to take the time to thank everybody who was there on the day as well as the ones that supported from afar, weather it be a prize or cash donation or even advertising and spreading the word.

Unfortunately The Cystic Fibrosis Trust is not widely recognised as they do not have the funds for tv ads etc, so rely heaving on fundraising events to help make the lifes of sufferes much easier.
With the life expectancy for sufferers creeping up from just age 5 to mid the 30s (average) since the 1960's we are doing something right, advances have been made but unfortunately it is still an Incurable disease. Sufferers still face a lifelong challenge to stay alive and as healthy as possible in to their adult life. Yet some still lose their battle far too soon, leaving behind grieving families that are angry and frustrated at a disease that destroys the body year by year, and as of yet Incurable, CF is like living with a ticking time bomb, so please....

Together, lets make CF stand for  'Cure Found' 
It can be beaten!!! .... we just need your help

With many heartfelt thanks I will leave you there with some photos of the day to look through 

Tuesday, 29 October 2013

Brand revolution

With the threat of benefit cuts I felt compelled to write from the view of 'a benefit scrounger' because after all, aren't all people on benefits now labelled as that without a care for their situation?

In a political world where profit is key, why would anybody feel they should support the vulnerable when they cost taxpayers millions of pounds every year.

I receive benefits. I have done since I was 3 years old. Disability living allowance (DLA) in my main source of income. Under currant guidelines i am entitled to the highest rate of care and mobility components of this particular benefit. I receive a cash payment each month, I also have a weekly allowance to pay for a car.
Is this wrong? In today's standards, quite simply, yes. Or at least it is in the eyes of the government.

DLA is soon to be switched over to a benefit called personnel independence payment (PIP) every single person receiving DLA is going to be reassed.

When I was diagnosed with Cystic Fibrosis at just 6 weeks of age, the governing party of 1987 decided this was enough to warrant my mum with these payments to take care of me, as it was then to be her full time job.  An extremely low income for a job that never ended. 
True, motherhood is a full time job, a reason many mothers get money today for doing this job but add to the equation a terminally ill child. A child that was never expected to live past their 5th birthday, the job becomes so much harder.

Cystic Fibrosis is a lifelong, life threatening illness. It's degenerative meaning each year it is more likely to decline that get better. Aside from getting hit by a bus or some other freak accident it will be the thing that kills sufferes. And kills them far to young. 
Life expectancy when I was born was 5, but thankfully with advanced technologies in science this is a figure that has now lept to 38. A child born today with CF can expect to live an almost 'normal life' with 'normal life expectancy' 
But the generation of the 80s and even some in to the 90s still live with the fact that they are unlikely to see their 40th birthday. They are of course entitled to the medications that newborns are but years of poor treatments and poor knowledge, means that once the scar tissue in the lungs has occurred due to reoccurring chest infections month after month, the damage has been done. It's irreversible. 
So many young people have been forced to consider the fact that a double lung transplant is the only way to enjoy an extra few years with their loved once. 
A procedure that is in no means a walk in the park, and even post transplant, to still be somewhat ill. Dying on the table is a possibility, rejection is a possibility, just 2 of the numerous problems a post transplant person will face. It is no means a cure.
Cystic Fibrosis is Incurable, but transplantation may be the only thing to stop the initial onset of death at a tremendously young age. 
I have seen friends die at the age of 12, age 15, age 22. People having transplants as children, teens and young adults. Some to go on and have a reasonable, even good quality of life. But some to face the prospect of rejection and death.
But to get to transplant stage you need to be in critical health, a life expectancy of just one year without transplantation. At the very end. At deaths door. And even then to get listed is a trial in itself thanks to donor shortage.

However the government are now deciding that by one simple test of walking distance, weather you will be entitled to financial help. An income.
50 metres!
If you can walk more than 20 metres but no more than 50 you can get benefits.
Anymore than this, you are in politicians eyes, fit for work!
It shocks me that a bunch of suits can determine this and pigeon hole all disabilities in to this category.
When I'm well I can walk 50 metres, hell if I'm lucky I can really jump out of this disability bracket and walk 60 metres....don't tell the government though or I will be stripped of everything I have and  be thrust back in to the world of work, because my legs can carry me a few metres over their guidelines!

Never in my life have I heard something so ridiculous.

Now I use the term 'well' loosely but, Well days, my lungs function at 35% of an average human based on my sex, age, height, weight and ethanticity.
 These days I will wake up after possibly a good 3-4 hours solid sleep, I may even be able to sit up the first time I try, I may not wretch and gag on the sputum drowning my lungs. I may not even have a crippling headache, I may even be dry from not sweating from high temperatures in the night. 
I will only need to do 2 inhalers, 2 nebulisers 1 hour of chest physiotherapy and clearance, only need to take 2 feeding supplements, with 8 tablets and 1 shot of insulin and luckily enough I may only need to swallow 50 tablets that morning. 
I'd be pushing my luck if I could shower myself, dress myself and possibly tidy up after myself. Then after all of this I may be able to keep my eyes open for an hour or 2, or venture outside the house because the fatigue and exhaustion may spare me for a while. 
I just prey these days coincide with a day of 'duties' an hours drive to London to have a needle placed through the skin of my Breast to flush a line parralel to my heart, clean of any blood clots that will administer essential and aggressive antibiotic regimes when I am infact 'ill' 
The days i will need to meet with my consultant to discuss treatment options, the dietician to check my weight and calorie intake, a physiotherapist to ensure the devices I am using to clear me of bug ridden sputum is working effectively and efficiently, a psychologist to help with the burden of my daily regime to live, to breath.
I prey that these well days are the days I need to go to the GP for a medication review, a blood test to make sure the treatments im on are not poisening my liver and kidneys, a repeat prescription, blood pressure monitoring.
A trip to the local hospital for retinal screening to ensure my insulin is stopping high sugars and turning me blind, hearing tests to ensure toxic drugs are not about to make me lose my hearing. 
I could walk instead of travelling in a wheelchair and use a mere 2 litres of oxygen while walking at less than a snails pace.
But walk neverless, and if I exceed more than 50 metres I will then need to fit in a full time job to support myself. 

This full time job however will need to be one of extreme understanding, compassion, lenience and support. For when those 'ill days' occur I will not be in work.

I will either be lucky enough to take on extra treatments, at home, in my own bed, fatigue and general health allowing so. With the support of my family who will come and help me administer even more medication during the day and night.
An extra 20 tablets on top of the usual 50, 4 extra nebulisers and another 2 -3 hours of physiotherapy. I will not be able to shower myself or change my sweat soaked bedding. I will be regularly sick from from the addition of 3 intravenous antibiotics that will rid me of this current chest infection. I will need help to have a sterile environment to draw up and administer this potent mix of essential support for my body 3 times a day. Nasal gastric tube feeding will commence to deliver me of an extra 2000 calories to help me fight the infection. 
Or I will be in a hospital bed completely unable to do anything for myself, relying heavily on specialists to get me back on track. Sleeping all day only waking to be fed and see family. Walking would become an impossibility, my lungs will then function on 28-30 % average. I will go everywhere in my wheelchair and be increased to 4 litres of oxygen. Far from walking 20-50 metres, 1 metre will become a challenge I have to overcome once again.
These bouts last 3-4 weeks at a time and happen every 8 if I'm extremely lucky, but 6 is the most amount of time I can go not needing the extra support.

Does this make me disabled? Unfit for work? Does it make me a burden the tax payer could do without? Am I infact a scrounger? 

20 years ago the support network of welfare was put in to place to support the needy, the unable bodied, the weak, the vulnerable, the terminally ill.

 Cystic Fibrosis fell under this category.

The make up of Cystic Fibrosis hasn't changed, only the support network has.
What, in the governments eyes has changed so drastically that it sees Cystic Fibrosis sufferers as able bodied and a group that no longer needs support from our country?

The simple fact is that it's the money that has changed.

Cameron is in the process of taking the EU to court to defend British bankers salary, bonuses, the amount of tax they should pay, but is it not infact these very people that should be supporting British disabilities.

Tax evasion and tax havens are where our governments priorities lie, their own greed and need for the finer things in life put ahead of people's own right to live in less than squalor, in a world where they can feel poverty is not around the corner, a world where the disabled are thrust out of a support network. 
Is it not enough that they are cutting the very thing we need most, the NHS? 
The ability to access treatments that can save their life, they are also cutting the basic needs of food, utilities, heating and housing just to save a buck. A buck that will be put back in to bankers & politicians pockets.

I can't help but wonder how different the story may be should they feel the burden of terminal illness, their own fate and mortality constantly thrust upon them. Should they step out side of their world with the weekend country house & pool, the acres for their children's horses and corrupt and corporate world of profit and live in the real world.

Would they walk a week in mine or anyone elses shoes, would they then reassess the support network they are so keen to abolish?

Would I, as well as many others still be made to feel a burden on the country, something the tax payer could do without, a tarnish on a society they want to be perfect.  

Or are we infact in our right to request support from the county we live in?

Recently in an interview with Jeremy Paxman, Russell brand spoke of a revolution for the very people like myself.
After announcing he had never voted and being attacked by Paxman for it, I can't help but think he is quite possibly the only person who actually understands the real world. 
The world where generations have not been supported, the generations of drug addicts, theives, homeless and disabled.
He has been there. At the depths of despair and left to his own devices to rot instead of getting help from our government.
A government that when wanting votes claim to support these very people.
A trick to getting votes maybe? a false promise of understanding merely to get in power, then magically forget the people they claimed they cared most about.
I have voted for these very parties, but as Brand has pointed out, why waste your time voting when nothing seems to change for the better.

I have and will at least try to stay open minded to people's views and opinions, but I find myself shutting off to it as our country goes to pieces. In a world of politics so huge. who am I to question or try to change how Britain is run.
Run for prime minister I never will, but I will definitely back what I believe in and Brand and his 'revolution' is something I feel quite excited about. 
Could he possibly be the very person who opens people eyes to the very corrupt nature of our politicians?
An ex drug addict, a former person of the low life, surely not?! 
Well, why the hell not, he is at least real! 
Based on the backing he has on twitter and Facebook I'm guessing, many people agree with him. Me included.

We can only hope for change