Saturday, January 19, 2013

Across that Line.........

Can not believe I haven't updated since last March...almost a year, where has the time gone! It's been a another tough year again for different reasons, to continue from where I left off last year.

I was trying to get some outside help (HomeCare Services) and having issues with the height of my water-bed, my bed was to low for the carer's to be safe from injury. So getting a Hi-Lo bed would suit the carer's, keep them safe and myself. My OT put in a request to the government (Enable NSW, Aids and Equipment Program) for a king-single high capacity Hi-Lo bed that will support the weight of my water-bed. Unfortunately it was denied, they couldn't justify suppling me with a bariatric bed when I'm not obese. Their reasoning was, why was I different from anyone else. Even though it was explained to them how important it is for me to keep warm in winter and to keep my back protected. They agreed it was an unusual case, but they would only pay for the cost of a normal single bed and if I wanted to, I could do a co-payment and I put in the difference for bariatric bed. So that's pretty much what I did do. It was a fair bit of money to fork out and I still had to buy a new water-bed to fit, as mine was only a single bed. I wasn't so cheesed-off with putting in the extra money, but I was cheesed-off with the fact that the Hi-Lo bed is still the property of Enable and if it brakes in anyway I would have to pay to have it fixed. 

I had to wait for funding to become available before I got my bed and HomeCare wouldn't come in until then. So finely Enabled contacted me with the funding but there was another 4 weeks or so to wait for the manufacture to get one in. I had to wait until last year (November 2012) before I got my hi-lo bed, Enable also funded the hoist which I got fairly quickly.

The worst part was tying to arrange HomeCare to be ready to come in, in-time for the delivery of my new bed. I had three appointments with them prior to getting my bed so it would be ready to go. I along with my case worker was under the impression that it was just a matter of havering all the right equipment. Boy where we wrong, I'd be lucky if I'd get a service in the new year, despite having been in their system for years with the cleaning service!!!

Things became more frustrating, as the height of the new hi-lo bed at it's lowest point, was to high. My feet barely reached the floor, making any transfers with help more difficult than it was before. Usually I'm able to sit on the edge of my bed to dress myself but now, that too was taken away. In the mean time it was such a struggle getting going in the mornings. I couldn't get a HomeCare service until  a space becomes available, they couldn't tell me when and there was no waiting list. I was just told to ring every few weeks and hope one becomes available. I had done all the right thing's, spent a heap of money and now I was worse off then before.

I had some real dark day's, some day's even thinking I wish I wouldn't wake the next morning. I had to fight off those thought's, only because I though of how selfish of me. To do that to my family, for them to find me not here the next morning, even though it would solve my problems. Never, have I had any thoughts along these lines before, of course only in passing which I think everyone has had at some stage in their lives. Even having the gut's to pull off something like that. I didn't want to wake-up and find it wasn't successful and possibly being left in a worse condition than I am now. On top of all that it was difficult coming to terms with not being independent anymore, relying on others. And besides it was Christmas, I didn't want to spoil it for everyone, especially for the little ones. I was just tied, stressed and had been fighting a chest infection which I hadn't had in years and was taking ages to shake off. It had been almost a year now and I was over it, I just had to hope that surly in the new year things would have to change.

Well obversely, as you can see I'm still here...LOL...and yes I finely got a service 2 weeks today, 7 day's a week in the mornings, just for now. I will need more in the future, it's a start. 

I feel like a load has been taking off, I was really worried about how I'd cope with a bunch of strangers seeing me at my most vulnerable state. I've been such a private person, it had been playing on my mind for such a long time. I'm not totally comfortable with it, I don't think I'll ever be, especially with being hoisted. I feel exposed and I think I'd die if someone walked in...LOL..... But having said all that I have been surprised at myself, it's not as bad as I imagined it would be. I can say however, I have meet some really nice, caring and interesting people. I was worried that it would be a cold and monotonous experience but apart from the hoisting it's been quite the opposite. I don't think I'll ever totally be comfortable and that's because I'm not comfortable with my own image. I was a little apprehensive that first day, but the carer I had is such a nice person, she made me very comfortable, we clicked straight away. It took a load thanks to you, you'll probably know who you are if you read this.        

More Soon.....             


  1. I found your link through the spinal boards. I have an inoperable ependymoma T10-L2, with spinal cyst. Just thought I'd drop by and say hello. I'm wanting to eventually do a blog too, with information from my MRIs and such but still not feeling well enough to handle it and get all the slides together. :)

    You are a brave lady, hang in there.

    1. hi, Hope you feel better soon...let me know when you start your blog, I'll be happy to add your link...take care n thanks for stopping by and taking the time to leave a message. <3