Sunday, 29 June 2014

Disability Support and Lupus

Right at the moment, there's a lot of discussion going on over the review of the Welfare system here in Australia.

There's a 176 page report available. (You can see a copy of it on the ABC news story about it.) There was a time I would have been able to read it, translate and summarize it for you.  That was before lupus brain fog.  Now, I'm settling for reading and watching news and making as much sense as I can of what journalists have already read and interpreted. (In research, that's called using secondary sources instead of primary sources, which is of limited value, but let's make do for now.)

One of the things being talked about is the Disability Support Pension.  According to news reports, the report is recommending simplifying all Centrelink Payments (which I'm sure nobody would argue with.) But it's also recommending moving a number of people off the DSP if they are determined to be not permanently disabled.  People would be on other benefits the same as job seekers, and would be expected to be looking for work.

For the most part, there seems to be some awareness of the reality of disability, but what shocked me, was seeing a copy of the Courier Mail in a shop, and seeing this headline glaring from the front page:

Disabling rorters: Planned Disability Pension Scheme overhaul could force thousands of Australians into workforce

You can read the Courier Mail's whole story (on-line version) here.

I guess you can tell what I'm objecting to here.  There's some kind of assumption that people on welfare are all part of a scam. We're taking advantage of the workers.  Even the Federal Treasurer Joe Hockey, when talking about the need for welfare reform said that Australian workers were working one month of every year to support welfare recipients.

Was that designed to make everyone with a job resent those of us who can't work?  My guess is yes, it was.

So what's the reality here?

I've worked part-time for a while since I began receiving the DSP. (And of course, the DSP was reduced accordingly for that period of time.)  Then my cognitive dysfunction (brain fog) became worse, and it reached a point where I just couldn't work.

I can write, because I do it at times when my mind is working. Having an actual job would require me to have a functioning brain at set times.... something I can't guarantee.  I can't even guarantee a functioning body at a set time.

In a sense, I am doing very well. I did get approved for the DSP.

  I know of other lupies who have been refused DSP, even though their doctors have told them they can't work. They're left in limbo.  As far as their doctors are concerned, they're too disabled to work. As far as Centrelink is concerned, they haven't proved themselves disabled enough to stop work.  Some of them are going without their medication because they just can't afford it. Going without medication will mean they get sicker. Eventually that will lead to extra costs in the healthcare system - which will prove to be a false economy for the government.

I won't write a response to the report and send it in to my local member of parliament.  My brain just won't do anything that difficult any more. But I hope people who are healthier than I am will.

Further information.
ABC News: Blueprint for overhaul of welfare system recommends simplifying payments, extending income management.
Courier Mail: Disabling rorters: planned Disability Pension scheme overhaul could force thousands of Australians into the workforce.
Sydney Morning Herald: Thousands to lose Disability Support Pension under changes flagged by government.

Thursday, 26 June 2014


I went to the supermarket on my own today.

That's right, I went out in public, totally unsupervised.  There's no way that could end badly, is there?

I was fine until I started to get tired and sore.

That happened a little faster than usual, because I was pushing the trolley.

Once everything was in the trolley, I was more than relieved to line up at the checkout. I waited patiently for my turn.

When I was finally at the head of the line, the checkout operator looked at my trolley and just said: "That's more than 15."  I hadn't realised I was in the express lane.

I went on to another long line and had to wait again.  Since my hips, knees and ankles were already hurting, standing in line was quite painful.

At last I made it to the carpark.  When I got home, I found my son had arrived before me so was able to take the shopping inside.

All I had to get from the car was my handbag and .... no walking stick.

I can remember having it as I pushed the trolley to the car. After that?  I have no idea whatsoever.

I rang the shopping centre, and it hasn't been found and handed in.

It looks like a need to go shopping for another stick now. I'll wait until someone's free to go with me.

Monday, 23 June 2014

Handing Over Responsibility

I've done it.
My first medication pre-pack.

I've thought about it for years, and at last, with great trepidation, I've done it.  I've handed over responsibility for my weekly pill sorting task to the local pharmacy.

It was getting to the point of being half way through sorting and saying "did I put in....?"  "have I remembered....?"

So the time had come.

It's $2 a week on top of the regular cost of my medications, so that adds up to about $50 a month, and my fish oil doesn't fit into the pack.  But mostly, it's all done for me.

I picked up my first month's packs today.  Actually my first two months' packs, because I'll be going overseas soon and needed to have some to cover that time as well.

The details of all the medications is listed on the back.  Which is good, because it allows me to still be obsessive. I can obsessively check that they haven't made a mistake, instead of me making a mistake. (I just checked the back, and it says I have one methotrexate tablet on Sunday night.  Actually I'm meant to have two and a half.... so I guess I'm ringing them in the morning to sort it out.)

The days of the week are set out so that tomorrow is the bottom strip of pills. I can take the single strip off and carry it in my handbag if I'm going out.  The next day is the next strip from the bottom, and so on, up the pack, making it easy to separate out the strip of pills for whatever day I am going out.

It may take a little getting used to.  But I'm no longer spending half a day each week sorting out my pills. Maybe once the first bugs are worked out of the system and I'm used to just picking up my pills, ready sorted, each month, I'll even feel comfortable about handing over the responsibility.