Nana always said…

“Your eyes are bigger than your stomach.” I would respond that it couldn’t be true, because everyone said I had very big eyes. But she was usually right – I had a habit of piling my plate high with the things that caught my appetite-filled eye, which my little tummy couldn’t possibly keep up with, and invariably, at the end of the meal, there would often be things left on my plate, things I had placed on that plate with every intention of eating, every desire to enjoy.

I suppose I’m still doing that, 20 years after my dear Nana passed away. Not with food anymore – I’ve learned my lesson there. But I still feel as though I bite of more than I can chew in other aspects of my life, and I wonder if I’m incapable of learning.

Put simply, I take on too much. I put too much on my plate, and then I feel sick when I try to take it all in. And, unlike when I was a child, I don’t have anyone watching me at the table, making sure I clear my plate – nowadays the pressure is only coming from me.

It’s complicated, I suppose. I’m not piling up my plate for no reason. It’s two-fold – appetite, and need. Let’s start with appetite. For a long time, I didn’t have much of an appetite. I had lost the life that was mine, my plate had been overturned and scraped clean by my circumstances, and I didn’t have the strength or the heart to fill it up again.

And honestly, what would I have put on my plate then? I could barely get out of bed, I couldn’t trust my body or my brain, and I didn’t even recognise myself anymore, let alone my dreams and ambitions. I was not hungry. And even if I was hungry, the things I used to put on my plate were things I couldn’t eat anymore – no more dancing, no more studying, no more driving along the highway at night while singing along to David Bowie at the top of my lungs.

I simply survived for a while. I watched DVDs, I played The Sims, I cuddled with my pets, I talked to my therapist. I stayed in my tiny world, the world that didn’t require me to digest anything, to be anyone.

Eventually, my appetite came back, little by little, and I started to add things to my plate again. One of the first things was my old blog, ‘Warning: Honesty Ahead’, where I documented my health journey, in particular the investigation, diagnosis and treatment of Lyme disease. My habit of putting pressure on myself to finish my plate reared its head there – I’d kick myself for not writing often enough, even though I didn’t have a swarm of readers waiting for each post.

I wanted my stories to be more accessible, and so I started a YouTube channel. And again, even with no subscribers, I put pressure on myself to create content, to make, to produce, to perform, to provide. If I didn’t, there wasn’t anyone online telling me I was letting them down. That was all me. My YouTube channel started out with me uploading videos whenever I felt the urge, and then I decided to stick to a consistent schedule – and you best believe I punished myself if I couldn’t eat what I put on my own plate. I did, however, cut back on posting on my blog, so I will give myself a nod for some self-control (although the occasional update posts are dripping in shame at my lack of production).

I was creating YouTube videos every fortnight – so was the plate of this chronically ill, chronically depressed, chronically anxious person full yet? Did I have enough to deal with? Was I satisfied? Of course not!

And this is where the other aspect comes in – the aspect of need. Sometimes I add things to my plate, not because I have a particular appetite for them, but because I have a need, mainly a financial need. My consistent income is the Disability Support Pension, and it is not enough to cover the cost of my medications and supplements, which reaches into the hundreds every fortnight. Contrary to what many believe, the government does not subsidise all of my medication, and so I often have to go without, simply because I cannot afford it all. I regularly need to make hard choices – do I skip the pills that support my liver function? Or the ones that support my brain function? Or the ones that support my sleep? Or circulation? Or lessen inflammation? I need to choose, because I can’t buy them all.

So, a few years ago, I added another thing to my plate – busking. I had been teaching myself guitar, and I felt confident enough to play outside the walls of my own home. I started busking outside the local shopping centre, every week, come rain or shine, as well as occasional markets. This time, it wasn’t just my own arbitrary pressure telling me to pile up and finish what was on my plate. If I didn’t, then I wouldn’t have the money for medication that month. I also started gaining some recognition around town, and if I did need to take a week off sick, people would say they missed seeing me.

The busking situation ended when there was confusion about permission – some sources at the shopping centre were saying busking was permitted, some were saying it wasn’t. I got sick of the back and forth and took a break. Around the same time, my partner and I started a Warhammer gaming group. He had recently moved from interstate and wanted a way to meet people (and so did I, my social life was pretty anaemic), and our community didn’t really have much like that. We established our group and were meeting every Wednesday afternoon and one Saturday a month.

This filled my weeks and drained my battery. If I needed to book an appointment, I threw it on a Wednesday since I was already out. If I managed to get a market gig, it meant less free weekends to relax. I was also putting more focus and energy into writing my own music, and because I wanted to really shine at that I began taking guitar lessons for the first time. Budget and time only permitted me to commit to once a fortnight, but that still weighed down my paper plate.

Surely I was done, right? Oh, sweet summer child, when will you learn? There were still little gaps on my plate where I could squeeze in more unnecessary morsels. I had been harbouring a longing for a creative project that I decided to finally begin this year – sharing recordings of myself reading poetry. I love poetry, and there’s a wealth of poets whose work has gone into the public domain, which means I can share it without fear of copyright biting me in the arse. I’ve also be told I have a relaxing voice to listen to. Over the years, I’ve been compiling poems, and I already have hundreds, and I’ve barely waded into my alphabetical list. At the beginning of this year I finally launched the Public Domain Poetry project.

It seems like an easy task – record the poetry, upload it, help people fall asleep. But no, I have to make it difficult. Why put a boiled egg on your plate when you can make an entire frittata? I record the poem, then I create a video with the words of the poem, then I make sure the words appear in time with my speech. Not only that, I create a widescreen version for Youtube, and a portrait version for TikTok and Instagram (geez Louise, why do I do this to myself?). And I knew that I had so many poems to share, so of course I made plans to share a poem every single day, plus maintain a Patreon where I’d share full poetry compilations in advance. Of course.

But plans changed, as they do. I’ll give you some context. I live in a cottage in the backyard of my parents’ house – we live on a large block in a rural area so it’s not too cramped. They didn’t have a mortgage on their home as it was left to them by my grandparents, so when I desperately needed a wheelchair-accessible home, they took out a loan to build a granny flat (it was either that or putting me in a group home, and we knew my mental health wouldn’t be able to weather that). It’s very compact and really only designed for one person, which was fine, because I was meant to be alone forever.

Then I surprised everyone and fell in love. My partner moved into my little cottage. We’re very happy together, but we don’t want to stay here. This area isn’t good for either of us, especially me. Access isn’t particularly good, there’s no accessible public transport, medical care isn’t ideal, specialists are thin on the ground, and all of that is going to become even more inadequate as I get older.

So, we need to leave. But finding a wheelchair-accessible house is pretty much impossible, and the NDIS avenue is closed to us (we’ve tried). The option we’ve come to is to buy land, and move our cottage – basically bring the house we know I can use with us. But first, we need to help my parents pay off the the cottage. And to do that, we need much more income that we currently have (and considering we don’t really make ends meet now, it’s a big goal).

My partner is studying so that he can get into an industry that has a lot of work opportunities locally, but I know I also need to contribute if we’re going to make this happen. I’ve previously taken it for granted that regular, structured work wasn’t for me due to my disability and illness limitations. I’ve tried other avenues, such as my music work, and selling handmade things at markets (that’s been kind of a bust, so creating and managing an Etsy store has gone on the plate as well). But I began to look at more steady possibilities.

I came across something called clinical coding. It was actually on a list of jobs for people with social anxiety, but after reading the description, I realised it was perfect for my disability and chronic illness limitations as well. It’s usually a work-from-home position, and it’s predominately data entry, which is something I had looked into before. It’s also a well-paid job, probably because it’s tedious data entry that only a socially isolated autistic person with a special interest in healthcare would even consider taking on… wait, did someone say my name?! This could honestly be my ticket to having a consistent income in the future, as well as being able to contribute to Australia’s healthcare system.

So, this year I started a Diploma of Clinical Coding (which, plate-wise, is pretty much an entire damn meal). I’m able to do my course over two years, which is perfect for me. And I did take off some of the frittata by cutting back the Public Domain Poetry project – initially to three poems a week, and then putting it on a complete hiatus (with much guilt over disappointing my 7 YouTube subscribers), as well as cutting back our Warhammer group to fortnightly instead of weekly. But it’s still a massive workload – I’m basically studying all the time.

And the thing is that this course isn’t subsidised. I need to pay the full six grand, albeit in installments over the 24-month course duration. How do I do this when I already don’t have enough income to pay for the medications and supplements I need to function?

I throw another thing on the plate, of course! I won’t go back to busking, as that’s such a dicey form of income, but I am trying to get back into the cycle of playing markets, and reaching out to cafes and other venues to actually get paid gigs playing my own music. This inevitably also leads to advocacy and awareness opportunities, as I run into issues with access, and sometimes just garden-variety ableism and ignorance.

My partner worries about me. My therapist worries about me. I’m doing too much, I know I am. I just don’t know what else I can do, what else I’m supposed to do. It’s the cruelest cycle. I get worn out, I don’t sleep properly, I’m tired and I struggle to concentrate, because I can’t access the supplements that manage all of those things. But I need all of those things managed so that I can get work to make money to buy the supplements that manage all of those things. It really is like being unable to work properly on an empty stomach, but knowing that the only way you’ll be able to fill your stomach is if you work first.

So I’ll keep putting things on my plate. And I’ll keep feeling like it’s too much, because it is. And there’ll always be some things that I want to eat, and some things that I hold my nose and force down because I feel like there’s no other choice. I study, I practice music, I sew for Etsy, I go live on YouTube, I write new music, I plan song recordings, I contact venues for gigs, I reach out about advocacy opportunities.

And you know what I’m thinking while I’m doing all of that? “Damn, I really need to write more blog posts.

I’m sorry, Nana. I really haven’t learned.

Bless,

Nell