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

Silence is Golden

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  

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.

Everyone needs “ME TIME” …

Posted in disabilities

HILLS HOIST! NOT ANY MORE

I’m one of those people who won’t give in to my disability. “So I’m miss independent”, what’s wrong with that?

One day, could be sooner rather than later, I won’t have the use of my arms. I’m not there yet but I am realistic and know its in my future.

In the meantime I do what I can with the help of some pretty neat AT (assistive technology)

I’ve had a pretty good system going in my laundry for some years now but I have been struggling with it lately.

My arm strength ain’t what it use to be. After all I do put them through their paces at times.

Anyways, I’ve been searching for a solution so I can continue doing my washing/laundry myself.

I found it……

A power assisted clothesline that’s remote control, comes down to a height that I can manage to hang washing at AND it has heating, cooling fan and a light all at a touch of a button.

But wait there’s more…. at the time of purchase I decided to buy the pegs that are used with the line….yep pegs. The coolest pegs ever. So, I peg them to the garment while its on my knee then I hang it on the line. The pegs have hooks making it so easy for me to just reach up one hook at a time and hang my clothes over the line. So no more trying to hold the garment up to the line with one hand while pegging with the other.

I love it so much that I can’t wait for the next load of dirty washing just so I can hang my washing then press a button and send it to the roof/ceiling to dry.

TopLine Clothes lines

remote control, heating, cooling and light
easy to use hook pegs
stainless steel

Posted in Accommodation, Vacations, Wheelchair friendly

VACATIONS-Wheelchair friendly ?

Vacations or a need for wheelchair friendly accommodation! Frustrating it can be!

In the last 4 years I’ve had to find wheelchair friendly affordable accommodation in Sydney, Melbourne and Adelaide. It starts with me scanning the available wheelchair accessible accommodation online. I then run through to find the affordable rooms, one with 2 separate beds, a bed for me and the other for my carer. I then search for pictures they may have of the room and most importantly of the bathroom. Just because they advertise wheelchair accessible rooms, check check and triple check before you book your room.

I don’t book a room through the internet. I call, I speak with someone and ask questions. Firstly – if they say wheelchair accessible, I ask if the bathroom is an open planned wet area, no screens, no bath and can I wheel a shower chair into the shower area. My next question is how may beds are in the room. I’ve stayed in a few places that only have a king size bed in the room. Some beds can be split apart to make 2 singles and some don’t. I think some places think that only disable couples like to go on vactions, not us singles and not us singles who need the help of a carer. Times are changing people. Single people with carers are getting out there too. Our government is all about community access for us wheelies.

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I recently stayed at the Meriton Southport on the Gold Coast. I didn’t stay in an accessible room, I chose the 55th floor over the only accessible room which was on the 5th floor. So you can see my dilemma,  55th floor over 5th floor! …. hard choice …. NOT ….Seriously before I made the decision to take the view over bathroom, I actually viewed the room first to make sure I could use the bathroom and get in and out of my bed from my wheelchair okay. It worked for me.

My room had a Queen side bed with plenty of access to both sides of the bed. I could transfer using my slide board with very little effort. The bathroom wasn’t an open planned wet area, although it had ample space for me to use my shower/toilet commode.  The couple of things it didn’t have was grab rails in the shower or near the toilet and the mirror was too high up to use. Remembering though this was NOT a wheelchair accessible room.

I’ve been in rooms that are wheelchair accessible and still can’t use the mirror, this is why I travel with a mirror. I have other things I don’t leave home without.

  • My slide board – a MUST
  • Portable Mirror – a MUST
  • An extension lead (small) and a power board – a MUST
  • A plastic shower caddy that hangs in the shower – makes it easy to reach your shower toiletries
  • Wire ties – come in handy for all kinds of things

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Oh and did I mention a slide board …. lol  My slide board gets me out of a lot of sticky situations. For example … when I CAN see in the mirror and all that is around me is just a sink, which is pretty much all you get in a wheelchair friendly bathroom, no bench to put stuff on, well this is where my slide board comes in handy. I place it across the sink and use it to hold my makeup,  brushes for blow drying my hair, its even somewhere to rest my straightner on while doing my hair. There’s no compromising just because I’m in a wheelchair. Hair and face must be done before we take to the outside world … lol

I hope this helps you when deciding to take a vacation.  Its not that hard and I’ve never had a problem,  just be friendly and don’t forget to ask questions before you book.

Don’t forget live life like there’s no tomorrow …….💜💜💜

You can make a donation at

https://give.everydayhero.com/au/tracey-jackson-5#/?_k=wyu1ap

You can also find me on Facebook

https://www.facebook.com/KeepTraceyIndependentFundraisingPage/

Posted in Uncategorized

A Documentary about ME …

Yes you read it right …. I have had a Documentary film made about me “how cool is that?”…. they filmed my journey to qualify for the 2016  Paralympic Shooting Team. I’ve had my very own film crew following me around for about 2 years.

http://www.shootingforgoldfilm.com

It all started on a train ride home from a day in town (Brisbane City). I was in the city attending an independent living expo, where I spent most of my time stuck in one  spot with a flat tyre on my powerchair.  By the time I had it repaired it was time to go home.

I did learn something that day …. don’t leave home without a spare tube in case of a flat and if you ever do get stuck with a flat tyre, “CALL RACQ” They will come out and fix it for you “FREE OF CHARGE

My ride home is when I met a “STRANGER ON THE TRAIN“. One of the best days of my life, though I didn’t know yet. I met an amazing young man studying Film Making at Southbanks Griffith University of Film.

Lachlan James Morton has since graduated and is now on an adventure himself. First stop is Berlin.  Wolfe ( short film documentry Lachlan worked on) will be having its World Premiere at the 67th annual Berlinale, in the Generation 14plus category! .

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https://www.facebook.com/WolfeDocumentary/

 

So proud of this young man. I had an opportunity to view a short version of my own documentary and WOW !!! I can’t wait to see the full version.

Click on the above link to “WOLFE” the documentary facebook page and follow Lachlan and his crew members in Berlin. Wish them Luck  – “break a leg” isn’t that film talk for luck?

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Go out there and live your life to the fullest,  live life like there’s no tomorrow …

Please click on links below to view my fundraising pages

https://give.everydayhero.com/au/tracey-jackson-5#/?_k=wyu1ap

https://www.facebook.com/KeepTraceyIndependentFundraisingPage/

Posted in Uncategorized

Its My Life Now or Never

I use wheels in place of legs …. yep it sux BUT you can choose to embrace life and just live in the moment.  Live in the moment I do. My inability to do things like able bodes (AB’s we call you) doesn’t stop me. One thing you should never say to me is “you can’t do that”!!! Pffft.

Watch me !!!!

Okay ! so there are things, loads of things I can’t do and probably never be able too either but it doesn’t stop me from trying.

What make my life anymore unique than yours you may ask ??? Nothing absolutely nothing. Everyone’s life is unique to themselves. I’m no-one special,  I just love my life and I would love to share with you all just how I live my life with a disability.

My passions are 10m Air Rife Shooting, Photography, fundraising and helping (inspiring) others to enjoy life NOW because you never know whats around the corner.

The above photo is one of the best days in 2016 …. ME and Drag racing. My good friends allowed me to be a passenger and take to the strip once again. OMG !!! It all came rushing back to me.

Below are 3 face book links to my passions. My fundraising,  My Shooting and My Photography. By all means check them out. I hope you’ll enjoy my blogs. I have loads to share. My next blog will be about my last adventure. Until then ” live like there is no tomorrow ” 💜💜💜

https://www.facebook.com/KeepTraceyIndependentFundraisingPage/

https://www.facebook.com/traceyshooting4gold/

https://www.facebook.com/aimpointshoot/

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Please click on links below to view my fundraising page

https://give.everydayhero.com/au/tracey-jackson-5#/?_k=wyu1ap