It’s been a while since I did a personal health update, largely because I just don’t like thinking about it any more. I was reminded of this fact when I had an appointment with a social worker yesterday. She is an advocate who I employed to assist me with my NDIS application (though she has nothing to do with NDIS herself, nor does her agency in any way, and therefore has no say in their assessment of me).
It’s a brutal process, being sick. You see authority figure after authority figure and have to prove yourself to every one, again and again and again. Spill your story and retraumatise yourself in the process. You have to prove your life experiences.
The social worker understood the need to describe your worst day to NDIS (and every other agency who will determine whether you are worthy of services), and so do I. But it’s one thing to know this, and another to be questioned about every aspect of your daily life and reminded, that of course you can’t really do X by yourself.
Despite my best efforts, since June of last year, my walking capacity has deteriorated to about 10m, or the length of our front footpath. I have to take sitting breaks in between walking around the house. My showers and getting dressed need to be supervised, at least in some capacity. I cannot go out our back door, as the veranda has too many steps and thus our glorious backyard is inaccessible to me.
Further, my “usable hours” have diminished. If you are unfamiliar with this concept, when you are healthy/abled you generally can do whatever you like within the waking hours of your day (within reason). It’s not like, from 3-9pm you have to be resting in a dark room without stimulus.
When you are chronically ill, you only have a certain number of hours during the day to accomplish what you can. Note that this does not mean you can do whatever a healthy person can – it might be sitting up and eating, answering the door, talking on the phone or talking at all, typing on a computer or rolling over in bed.
My usable hours are about 11-3pm, and closing rapidly. I feel as though I’m losing my days, and what I can accomplish during that time is forever being reduced. I might be able to sew, some days, but usually it just means I can sit upright on the couch and have a cup of tea, maybe have a friend over, go on the computer or for a rare outing if I’m lucky. The rest of the time is taken up with rest* or the laborious process of getting ready for the day or bed.
It might seem from the projects I share that I spend most of my time knitting and sewing, but really sitting up at a sewing machine is a herculean task for me these days. I can get a garment out in short bursts but what I share here is likely what I have completed months ago, then took time to write up and photograph, then carefully portioned out in this space.
I don’t know where I’m going to end up, but having this decline and my obvious lack of capability pointed out to me in such clinical terms is, as you can imagine, not a particularly enjoyable activity. It’s going to be worse when I have to prove it to the NDIS themselves.
So, getting back to the NDIS. It’s been about 18 months since my initial application, and I still have no answer to my review (of their initial rejection). This social worker stated she would try to find out either way, and believes a tribunal hearing is the best way forward, which of course would be the worst way forward for my precarious mental health.
I’m so affected by having to do everything myself, and the lack of social support, that I have no choice but to pursue my application. But like most offers of support, I’ll believe it when I see it.
Oh, and it’s not like I’ve sat here twiddling my thumbs the whole time (which everyone LOVES to accuse chronically ill folk of). I’ve got a lot to report about various appointments, interventions and bizarre attempts to address my health problems. But this is too long already – I’ll report back another time!
*My version of rest, that is. What I consider activity is what you’d likely consider a rest break.