It's hard to ask for help.
I like to think I will eventually get to that whatever it is I hope to do. Unfortunately, incomplete projects are building up and building up all over the house and yard, and in my computer memory.
When we first moved here, my son had been taking time out from study, reassessing what he wanted to do. He went with me to buy my mobility scooter, and he is the person who assembles it, and pulls it apart, to put it in and out of the car. He brings the scooter battery in from the car to charge it up for me. He goes with me to doctors' appointments and remembers what things I have to do to follow-up when my brain fog's at its worst. He makes sure I take my tablets on time.
But of course, he couldn't just stay home all the time, unless there was a way for him to have an income to do it. As it turned out, there was. With help from my GP, we applied for him to have a carer's payment. (There's a link below to help you find information on carer's payments at the Centrelink site.)
Sometimes I worry that it would be better for him to be studying or working, doing "normal" things for a young man, instead of spending all his time with his Mum. But, at least for now, he's happy for helping me to be his "job".
Strangers in the shopping centre have told him how much they respect the work he does when he helps me out in the shops. It may not been a career he would have chosen, but for now it's what he does, and he does it well.
I still potter around and do what I can, but anything that requires lifting or stretching, or anything I'm just too fatigued for, he takes over.
To top that off, we also applied for help from the state government's community care services. I've been approved for one and a half hours per fortnight for help around the house. That means we have someone come in and do the vacuuming and cleaning the bathroom and kitchen. After the state government subsidy, I pay $5 per hour for that extra help.
(There's a link below to information for Queensland, but a quick web search should help you find your own state's equivalent.)
Because my daughter and her partner live upstairs, I was assessed as not needing help with the yard, because there are other able-bodied adults who could do the work. If they weren't there, more help could have been provided for yard work as well.
There's a basic lesson here.
Managing with lupus can be hard. It can be challenging, and just trying to do everyday things can be overwhelming. But you don't have to assume you have to do everything alone.
It's worth investigating what help is available in your area. If you don't know where else to start looking, ask your GP what she (or he) can suggest.
Remember, you may not get approved for everything, but you won't get approved for anything if you never apply. Ask, and you might just get the help you need.
Centrelink Carer Payment: http://www.humanservices.gov.au/customer/services/centrelink/carer-payment
Queensland Government Community Care Services: http://www.qld.gov.au/community/getting-support-health-social-issue/community-care-program/