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

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  

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