Wednesday, 8 December 2021

Preparing for Another Attempt at the NDIS

I got the shower chair a year or more
ago.  The challenge now, is 
actually getting in and out of the
shower.

Before the NDIS (National Disability Insurance Scheme) came into being, I had help from a Queensland state government program that provided someone to clean for me at a subsidised rate.  When I was assessed for that scheme, it was decided that enough adults lived with me (my house is actually two flats and my older daughter's family were here as well), that I didn't need help with the yard work.

Then, the NDIS began, and the state government scheme closed down.

In 2019, I applied for the NDIS.  Part way through I gave up in tears.  The process  was overwhelming, and I just couldn't handle it.

I decided I would just get by somehow.

Well, somehow isn't working. There's now only one other adult in the house with me, my younger daughter who is my carer.

Between us we are not keeping on top of housework, and with the very wet summer we're having the yard has become a jungle. (My daughter can manage it in normal times, but it's more than she is able to handle.)

Beyond that, my mobility scooter is having issues, and I have to start thinking about saving to replace it, and it's getting harder and harder for me to get in and out of the shower.  (There's a more accessible shower upstairs, but that would mean getting up the stairs.)

Crunch time has come.

Next year, I absolutely have to start the process of applying for the NDIS over again. I need help.

I would much rather have a job, be able to pay for everything for myself, but that's not going to happen, because I'm inherently unreliable.  I can never say ahead of time whether or not I am going to be able to be well enough.  

I write books.  (Yes, you can see I have started advertising them all over my blogs. Get used to seeing them.) That's something I can do on good days, which has the potential to make me and income. So far I've made a loss, but I live in hope.  One day I'd like to be independent of the Disability Pension, to support myself, pay taxes, all the things grown-ups are meant to do.

Since doing the one thing I've found I can do isn't paying bills and isn't helping with the extra costs of things I can't do for myself, I am stuck on the DP, and will have to beg for the NDIS. 

I'm far from hopeful, as there are so many news stories lately about people who have far more severe disabilities than mine having their NDIS funding cut (see links below), but I am going to have to try.

This time, I'm going to have to stick with it, no matter how hard it gets.


Related Post:

NDIS

Other:

.Terminally ill NDIS participant facing re-hospitalisation after funding cut for 24-hour nurse.2 days ago

.Father of severely disabled woman dies, NDIA tells 86-year-old grandmother to look after her.3 hours ago

The Guardian.Perth mother may have to quit work to care for autistic son after NDIS package cut by 70%.Labor accuses Coalition of 'stealth' cuts to disability funding as other ... told Nine News her child's NDIS package had been cut by half,....1 week ago

Sky News Australia.Many short changed after NDIS cutbacks.Many are finding their plans have been drastically cut back. There has been a 21 per cent surge in NDIS appeals to the Administrative Appeals....3 days ago


My latest children's book.  Wendy Watchitt, is available from your favourite online bookshop or from lulu.com/spotlight/IrisCarden.



Monday, 6 December 2021

Chronic Illnesses Hunt in Packs

 It's been a while.

Let me tell you what's been going on.

A while back I was diagnosed with diabetes. I'd been told I had it before, but persuaded the GP to let me try and manage it with diet alone.

It's got to the stage where medication was necessary.

The standard first up treatment for type 2 diabetes is a drug called metformin.

I've been on so many medications for lupus, some of which took a while to get used to, that I thought I could handle anything.

Metformin was rough.  I started on a low dose and very slowly increased it.  It was working, but I just wasn't handling the side effects.  Specifically I had diarrhoea  for four months.  You could say I had a really crappy time. I also found food just didn't taste right.

Eventually I told the doctor I just couldn't handle it any more.  She put metformin on my allergies list so no other doctors at the practice try to put me back on it again.

The diarrhoea settled after a couple of days, but food still doesn't taste right.

Now I'm taking empagliflozin. I have no idea how that's supposed to be pronounced.  So far, it isn't keeping my blood sugar quite as low as the metformin did, but still in the safe range.  This is also supposed to have side effects: one I'm hoping to get is weight loss.  Because it makes the body excrete excess sugar through urine, it does have a risk of kidney and urinary tract infections, so I've been advised to keep my fluids up.

I am starting to feel a bit more confident about managing diabetes.

It's scary getting a diagnosis of another chronic illness on top of the one I already had.  Sadly, lots of lupies have other chronic illnesses as well as their lupus.  It seems that chronic illnesses like to hunt in packs.

If there's a silver lining, it's that managing one chronic illness can teach us lessons that help us when another one attacks us as well. I already had a routine for taking medication - a habit that at set times of the day, I will go to my pill sorter and take the required meds, that ingrained habit didn't need to be learned. I already had my medication listed out in a way that makes it easy to sort my week's pills, and it doesn't take much to add an extra medication to the list, which then means I automatically add it to the pill sorter.  I already had a system in place for ordering medication from the pharmacy, so I have it in time for sorting my week's pills. I already had a diet designed around lupus and, with help from a dietician, it only needed a couple of tweaks to make it suitable for diabetes too. I already knew what exercise I can do safely, and what my limits are before a little bit of a good thing becomes a lot of a very bad thing (lupies who've caused a flair by overdoing activity know what I'm talking about). 

Most of all, I already learned a chronic illness diagnosis isn't the end of the world. I adapted to lupus. I can adapt to this. 


How are your Christmas preparations going? Written your letter to Santa yet?

Here's my dog Fanta's letter to Santa, from my book Poetic Pets.






Sunday, 4 July 2021

This is what it's like

 This is what life with lupus is like:

  • I bought a book on how to keep a house clean in 15 minutes per day.  What takes the person in the book 15 minutes takes me five hours and major pain relief.
  • One morning per week is assigned to sort my week's pills.
  • Everyone at the pharmacy knows my name.
  • Many people who aren't my doctor tell me my medications are dangerous (they are, but lupus and now diabetes are both even more dangerous), that they know better, natural, ways to cure things that medical science can only manage.  These people fail to acknowledge that before medical science came up with these tools to at least manage my illnesses, people like me weren't "cured"; they died.
  • I go for a walk with my daughter and the dog.  They're walking as slow as they possibly can, and I am struggling to keep up, pain increasing constantly. I won't yell at them to stop and wait for me, because a) I'm too proud, not wanting to admit I can't do it and b) they, also need some exercise.
  • The same torn up dog toy has been on the floor for a week.  At least three times a day I tell myself I will pick it up when my body lets me reach the floor.  After a week, I get my reacher tool and pick it up.  I don't ask my daughter to do it because, once again, I'm too proud to admit I can't do it.
  • I sweep the floor, because again, I want to prove I can do it without asking for help.  I trip on something (ironically, on the frame from around the toilet, that's supposed to help me get up), and find myself stuck on the floor, tangled in the frame, unable to get up and in extreme pain.  On this occasion, I do call my daughter for help.  It seems she would have rather swept the floor than pick me up off it.
  • My daughter is officially my carer.  Since I want to try to do everything for myself, she has very little work until I either fall over and can't get up, or am actually physically incapable of doing anything for myself.  I still push myself until I have flares and can't do anything, rather than say I need her to do xyz, because I persist in thinking I can do those things with no ill-consequences. Sometimes, I do get away with doing those things without consequences, and insist that proves me right in my delusion.
  • My house always looks like a disaster area, because I am really bad at housework (weak sore joints will do that), but I don't get my daughter to do it for me, because I want to do it myself.

  • I am told I now have diabetes, I have to learn to do finger prick tests, manage new medication, will probably have to change my diet and exercise regime again, etc. I just think: "I adapted to lupus, how hard can it be?" (But my daughter does come to all my appointments to make sure we both know what I'm supposed to do now.)
  • I still really resent that a number of years ago, my rheumatologist told me to: "Stop trying to prove you can have a normal life."