Category: Acceptance

Posted in Acceptance, disabilities, facioscapulohumeral muscular dystrophy, fshd, Wheelchair friendly

Silence is Golden

Posted on by lifesjourneyonwheeles
The Beautiful Redcliffe Peninsula (Clontarf) Queensland

Its not often I get to be alone these days……..

For those of you reading this that don’t know, I have FSH Muscular Dystrophy. An incurable muscle wasting disease. With no treatment or cure, I try to live every day like its my last.

I have support workers come in everyday to help me out with things I can no longer do for myself. Dressing in the mornings, meal prep for the day, washing and cleaning, then at the end of the day I have a support worker who puts me in the shower, prepares my dinner for me, attends to my catheter and tucks me up in bed for the night.

My independence is pretty much non-existence. The only time I have to myself is in the evenings once I’m tucked up in bed and sometimes weekends during the day. This is my rest time. This is my “ME” time.

Silence is golden and I enjoy every minute of it, when I get it.

It becomes tiring having to make conversation with someone when your not up to it. I’m lucky to have understanding support workers who now know me well enough to know just by looking at me, that I am tired or in pain. Thankfully during those times, I get to have time to myself.

We all need that down time!

One of my most favorite things to do with my “ME” time, is take a ride to the beach. By ride, I mean, by myself in my powered wheelchair. I live in one of the most prettiest spots, close to beaches and a walking path that take you from one end of the peninsula to the other, Clontarf Beach to Scarborough Beach.  www.visitmoretonbayregion.com.au/natural-attractions/the-moreton-bay-cycleway-redcliffe  

  • Woody Point Qld
  • Scarborough Boat Harbour
  • Pelican
  • Bee Gee’s Way – Redcliffe Qld

I love to cruise along the foreshore of this beautiful peninsula, in my wheelchair, taking in the breathtaking scenery along the way. I never leave home without my camera, my hat, a water bottle and some spare change for lunch or just a cold fizzy drink. Sometimes I take a bunch of photo’s and sometimes I take none. It all depends on the day. I love the sea breeze on my face, the sun sprinkling diamonds across the water and the soothing sound of waves lapping in over the rocks and sand along the foreshore.

I have a favorite place to sit at Woody Point, where I munch down on some whiting fillets and chips, followed by a coke (glass bottle only, as a treat). All the while listening to the calm lapping of the waves and taking in the view across the bay to Sandgate foreshore.

Woody Point Jetty
My Happy Place

Everyone needs “ME TIME” …

Posted in Acceptance, Carers, disabilities, facioscapulohumeral muscular dystrophy, find a cure, fshd, Inclusion, Job share, livelovelife, love life, Opportunities, Passion, sharethedream, volunteer, Wheelchair friendly

INCLUSION, ACCEPTANCE and OPPORTUNITIES …

Posted on by lifesjourneyonwheeles

Inclusion, Acceptance and Opportunities for us all ……. who live with a disability.

We want INCLUSION into mainstream

We want ACCEPTANCE in our community

We want the OPPORTUNITY to shine !!!

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Inclusion is important for our wellbeing. There is an awful lot of people in our communities with some form of disability suffering in silence because they are made to feel different.

So next time a person with a disability crosses your path, give them a smile, say hi, show them some love.

I want to talk about employment opportunities for people with a disability … those of us who can work, who want to work, yet don’t get the opportunity to do so.

I’ve come across employers who still have that perception of employing

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someone with a disability as being too hard, too high maintenance, even though we may be qualified for the position.

Are you aware that a person with a disability can and do work harder than most because

  • we appreciate and value the position given to us
  • we feel we need to prove we’re capable of doing the work
  • we don’t want to let our employer down

I know its wrong for us to think this way but it is what it is …..

I want to say to employers – “take a chance on us, we won’t let you down”. So the next time your looking to fill a position, think about employing someone with a disability.

take a chance

There are government agencies out there willing to work with you the employer to setup a work space for your employee. They’ll work with you both to get it right. There are other government incentives out there to that including wage subsidies.

I’m not saying everyone with a disability can and should work, I’m saying those of us who want to just need the opportunity to show our worthiness, please give us a chance.

https://www.jobaccess.gov.au/ – this link is for EMPLOYERS and EMPLOYEES (with a disability) wanting help to get into the work force.

I was fortunate enough to have had a couple of GREAT employers

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throughout my working life. I want to share with you how my last position came about. It was in a Pharmacy here in my local community. The position was advertised as a part-time but when I arrived for the interview it turned out to be a full-time position they we’re wanting to fill. I was so disappointed, it would have been perfect. I explained to the manager about my disability and how I couldn’t possibility work full-time. It would have been too tiring for me. I was ready to leave his office without the position,

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when he said to me – “Tracey, we would love to have you work for us, would you give me a couple of days, I’m sure I can find something for you”. I left his office thinking to myself – “don’t get your hopes up Tracey, no ones that nice”. Well I was so very wrong …. Mr Colley (my employers name) created a position for me. I was given 4 hours a day, 5 days a week, on the afternoon/evening shift. It was the quietest time of the day and would be less taxing on me. I worked that position for about 6 years. The pharmacy changed hands and my new employer was just as understandable. By then my disability was progressing and standing for 4 + hours was becoming difficult, so he allowed me to transition into an office position. I was still working 4 hour a day, 5 days a week. When it came time for me to slow down some more, Henry (my employer) suggested job share,

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where I could share my position with another person. That other person turned out to be my sister. Job share is a fantastic idea and it allowed me to continue working for another few years.

I worked with some of the most compassionate and caring people throughout my working life. I had the support and understanding that came with my limitations, yet I never let them see how much I struggled on the inside. I struggled with inner demons most my working life. Acceptance of my disability, self worth and embarrassment. I was so embarrassed of the way I walked, it was my No.1 struggle at that time in my life and here I was in the public eye daily. Its was bad …. its was a very unhappy time for me.

I now feel so grateful to have had the opportunity to work. It gave me a purpose, something I needed yet I wasn’t aware of it at the time. I stopped working in 1996. If only I had the support I have now ….

Inclusion helped my focus on something other than myself during a time in my life where I could have just simply given up.

I hope that someday we can all live in a world of INCLUSION, ACCEPTANCE AND OPPORTUNITY for us all.

Facebook – fb.me/lifesjourneyonwheeles

Messages – m.me/lifesjourneyonwheeles

I have another Facebook Page – What is FSHD? Awareness and Fundraising Page. The condition I was born with.

FACEBOOK –fb.me/whatisFSHD

MESSAGES – m.me/whatisFSHD

Live life like there's no tomorrow ... and enjoy it ...