Tuesday, 12 February 2019

Good Days and Bad Days

For some time now, I've had help at home with the heavy cleaning tasks.  This was under a state
government program.

Last week, I had a phone call from the agency which employs the cleaner.  The program was ending soon, and I needed to apply for the National Disability Insurance Scheme if I want the support to continue.

The NDIS is actually for people with far more severe disabilities, and not really tailored for people who need the kind of low-level support that I do.

I don't anticipate being approved for NDIS support at all.

Despite that, I dutifully took the forms to my doctor.  Because the forms are not designed for episodic conditions like lupus that are really debilitating some of the time, but merely annoying at other times, the doctor filled out the form in terms of how things are on my worst days.

If you read my previous post, you would realise that at the moment, I'm really well. I'm pretty much as well as I ever get.  The last thing I want to think about at the moment is what my worst day is like.

So we went through questions and answers:

  • On my worst day do I need help to shower?  On my worst day, I don't shower.
  • On my worst day can I drive? On my worst day, my son drives for me, neither of us think it's a good idea for me to drive when I'm distracted by pain and fatigue, and my cognitive function is awful.
  • On my worst day can I do my own shopping?  I mostly shop on line.
  • On my worst day am I able to get around without help?  Even on a good day I use the mobility scooter if I have to go any distance.  On a really bad day I tend not to get out of bed.
  • On my worst day, can I write?  It depends which joints are hurting - when it's my hands, holding a pen is painful.
You get the idea.  Here I am, feeling great, having to go back over the the absolute worst lupus does to me.  

What I end up with is a description of a decrepit woman who can't do anything for herself.  That person isn't me - well, it's occasionally me, but it's far from the whole story.

I know the NDIS is a great thing for people who have major impairments. I just wish we still had a system to help people who need lower levels of support as well. And I wish government forms and systems could take episodic conditions into account.


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