Running towards a million acts of kindness

Fighting Chance


Hi I'm Debbie,

If you haven't meet me, I am just a regular Aussie with a few hurdles to jump each day.  I am just one of many Australians who has physical challenges.  I was born with CP and have epilepsy. This month I have taken the pledge to be part of a relay team to complete 1 million acts in 8 weeks.

Having recently been ill I have pledge to complete 2 acts of kindness each week.  As part of my journey I am hoping to give kids with disabilities a Fighting Chance. Fighting Chance aims to create a world where people with disabilities live individual lives without limits. I want to invite you to join me on my journey towards completing 1 million acts of random kindness by making a donation to Fighting Change in order to make this world a better place to be.

You can follow my progress and the teams progress at 1million acts  or follow on  twitter or facebook. Please take time to visit and learn more about my charity today. email me to join my team or sponsor.  I
am wanting you to be mindful that people with medical conditions and allergies wear jewellery to alert passages by of their condition if they need help.

I was reminded that if I have a seizure it could be assumed I'm drunk, taken a overdoes, or diabetic. Wearing jewellery takes the guess work out of what might be wrong and can save valuable time. August is about beware and showing you care!

Thank you  
    

Queensland a state where not everyone counts!

From where I sit in my wheelchair and as a public advocate, it seems that Mr Neuman is making more cuts to the human service than anywhere else.  He seems to focus on potential revenue raising such as hosting sporting events and naturally support business, rather than continuing to pay for the human services that state governments have always meet.  Open your eyes and see Queensland is still a growing economy (may not that of the past). If the state invested in its greatest asset - people than more participation in the economy would occur. Those with positive approach and good well being are going to contribute more over time than one off sporting and corporate evens.  If we can afford to host APEC why can't we afford hospital care, NADIS, advocacy funding for tenant, mental health services, transport, maintenance to Queensland public buildings. e.g schools, hospitals & relate health care including buildings that house health services like breast cancer clinics,  , libraries; public transport; education and emergency services! I hope Campell doesn't have a heart attack and at a time the ambulance service is stretching at the seems and fails to respond in time.  All I can say my prorites for cutting debt would differ and continuing down this road he made be a one term Premier. 

Bitter Medicine

In a pill-popping world there are those who like to think there’s a pill to cure all ills. There are pills to take away our pain and pills to kill infection.   Pills that they say help with stress, boost our immune systems, pills that help us sleep or keep us away during the night. Pills to help us fight cancer and stop our body’s rejecting organ transplants. We can use a pill to supplement vitamin C and D and even iron.  But sadly there are times that the miracles of modern medicine fails to kill our ills and delay the process natural of decay, and we as humans struggle to understand why at times the pills fail; why pills can’t fix all ills and furthermore why pills work for some and not others.

For me this confirms we are made by design! We are individually fearfully created by God, and yet we struggle to comprehend why one medication works for one person and not another. 

Recently I was in hospital, the three studders were release, while the two ‘bad boys’ have returned to the grinds of daily lives with the assistance of medicine, this rose bud struggles to take growth, to open and bloom as she desires.  As I swallow a increasing amount daily bitter pills, I remain still quiet ill and fragile and my return to community life at times feels like a fading distant hope. 

My bitter pills are at best only enough to afford me a life outside of the hospital walls, while I wait for more tests.  The right medicine to help this rose bloom once again is dependent on a diagnose and the right treatment being found.

As common as epilepsy is and the many different pills on the market, for 30% of suffers, the pills we take are bitter and the seizures continue.  My recent hospitalization has been an awakening, a stark reminder that a common treatable illness still takes lives if the seizure is serve enough.  I thought I was safe and my bitter pills at least kept me alive, until I worke up in rescue in the hospital Emergency Department, the pills no longer work, we need to find new ones and determine if the lesion on my brain is marching repeating havoc. A simple MRI will tell us that, but when you have CP with involving movements routine test like CT scans and MRI’s are not so routine and it’s another bitter pill to swallow.

Bitter medicines are far from being the answer for all patients my team of specialists are optimistic that the test will confirm their gut feelings and the right medicine is accessible but having no medical insurance another bitter pill puts me on a waiting list and delays my recovery.

In a world of instant results friend and family want pills to enable me to be involved in life.  


Me! I just want space to rest in God’s loving arms while I wait for the medicine designed to bring the rose back to full bloom again.    

Epilepsy is just proof of having a brain!
Where's your proof?

A Case To Plead

Due to successive failures of the Queensland State Labour Government, I feel myself living in limbo with my freedom to live an Independent life style stolen away. Under the Labour Government the Department of Disability Services introduced The Growing Stronger was designed to give people with disabilities greater lifestyle choices to engage in the community.

Today I sit here with my choices and freedom frozen in time, as I wait for both Queensland Disabilities Services and Queensland Health to act.  To receive assistance through Disability Services I must have a permanent disability that is unlikely to improve without medical invention.  Yet I sit on a Queensland Health waiting list for medical test to determine if my new potentially life threaten disability can be treated, only when all treatment options have been explored can my application for assistance from Disabilities Services be reviewed.

 

Anyone to accesses the public health system knows, waiting lists can take years.  As I wait my active community life is now denied. I can no longer travel to work via taxi on my own, until I have doctors clearance.

The irony of my situation is I already have a permanent disability, as I was born with Cerebral Palsy and at 43 I am beginning to experience the effects of the aging process, this disability alone qualifies for assistance by after 10 years I continue to sit on the waiting list for assistance.

Calls pleading for extra immediate assistance from my doctors over the last 4 weeks have fallen on deaf ears.  Call back if her treatment fails or her condition deteriorates. While this makes no sense to my doctors, I just smile back saying, why would the pay up if they don’t have too.  After waiting for 10 years this attitude makes sense to me. 

Add to this logic is staff at Disability Services are still waiting for the Newman's governments polices changes to filter through and the end of the financial year looms. Now is the least likely time for the Department of Disability Services to be spending money.  My illness is ill timed indeed. And so I sit wait on a hospital waiting list trapped in my home until doctors clearance grants me freedom to move about independently in the community again. 

Every Australian Counts or Do They.

Please Support us on April 30th 2012

 While my fears and distrust still continues over whether a fair system of funding the Disability Sector can be found at least the NDIS brings hope. Despite having Cerebral Palsy; uncontrollable seizures and multiple health related problems, meeting my individual support needs has never been funded by directly the state government through disability services.  After more than 10 years I am still waiting for my support service, despite a category 1 rating, which I no long have as I’m too high functioning, I continue to wait for direct assistance.  How ‘disable’ will I need be under NDIS?  Under this ‘fairer system’ will I quality?

Or will it simply mean I have no access to other services under HACC. Being born with a disability they tell me will automatic mean I can access National Disability Insurance Scheme.

My hope for the National Disability Scheme is eligibility and thus service delivery is based on meeting my needs.  It focus is on what I can’t do without support.  So much support services are reflective.  I am tried of the one size fits all band-aid solutions.  I get help with things I know I can do, but not things I can’t do.  Under the current system I see so much money which could be better spent to support people with disabilities and the there families if funding was directed towards meeting actual needs rather than perceive needs.

I hope long after NDIS is established people with disabilities and their respective support systems continued to be consulted about service delivery and reforms. My name is Debbie Chilton and this is not only my story but the story of thousands of other Australians.  Please lend you support and make NDIS a reality.

An inside look!

I wonder if you could imagine what it is like to have no. of different people in your home each week to assist you with basic living tasks. Last week I six different works and friends who assisted me with my goal of living independently, I must admit getting to known three new support workers made the week more difficult and there week three days where I hardly had the energy to talk, yet alone explain to a stranger how I wanted things done.

I have made an effort just to standard back and observe workers and people over the last two weeks, have very little energy helped.  I never noticed how much we like to put our two cents worth in. I the same when a friend is sick drink lots of water take pandol , have you tired . . . I know my friends know what to do when they have a cold or the flu.  But I say it anyway. . .

So how do expect my workers to do otherwise?  I can’t! I need to learn to be gracious and take everything on board. I am thankful that they are caring people and say ‘thanks’. I hear what you’re saying but it doesn’t seem to fit with my experience.  Just as they don’t justify their opinions, I need to learn I don’t need to justify my response.  I should feel the need to agree just to keep the peace, especially in my own home.

Thoughts and opinions are one thing touch, moving or telling me where to put things is another.  So in I allow this imagine how many things could find move home in week.  At the end of a week no one can fine anything and that uses up precious time workers can be doing things not to mention my energy when I here on my own.

I been wondering where all my cloths have disappeared to.  Being in bed all week I wear my pj’s  It took ten days to discover, all my t-shirts are in my wardrobe, I’d convince myself I’d must of given them away.  Other things had moved too. Only one thing did the worker ask to move and that’s another of what happen when I said ‘no’ . . .     

Understanding my workers are trying to be helpful doesn’t seem to ease my frustration of constantly asking things not be moved or having to justify where I put things or what I buy for my own home. There are times when I feel battled fatigued. Days when I don’t want my books picked up or my craft put away, I struggle to explain why I want to be left alone and for one day just not to argue, defend or explain my choices.

Just for one day I wonder how others would feel letting others into their homes for help and defend or even change where they put things. Surely after one day they would understand a little . . . 

Purple Day