A MASSIVE thank you to Learn From Autistics for this opportunity and to Jenna especially for setting this up and interviewing me. It was such an honour!
What a month does, huh?
First off, I did want to come and start posting just before Christmas last year but I got a fun brand-spankin-new symptom of being unable to stand any light! Specifically blue light from anywhere; natural light, screens, everything. Warm light was better but still couldn’t use my regular glasses for too long so that was a real fun nightmare. There’s something about head pain that just makes it so much more unbearable. Let me tell you, endometriosis-associated pain is no joke, but (not to now jinx myself) if I had to choose between that, or a migraine, or the unbelievable combo of intense headache and eye pain I had? I’d go the endo pain.
The fact I couldn’t work on anything, couldn’t enjoy tv, read, anything, I felt like I was going to lose my mind. I was even thinking about getting botox because the pain would get worse because of the morning pain from frowning! I should explain I’m pretty sure my morning headaches were from the bits of light that come through my blinds and curtains, but any forehead contraction would trigger it.
However, after borrowing my dad’s very expensive but very effective fishing goggles (I couldn’t use them all the time because I have a thing called Absolutely Massive Head), I did manage to search for some blue-light/migraine glasses whenever my head was more manageable and found blockbluelight.com.au which seemed to be an actual Australian business that said the right things and had different lenses for different functions as well as night and day. Although still skeptical, I Afterpay’d the DayMax Taylor glasses for day/computer use and these wonderful looking orange tradie-chic FitOvers that go over your normal glasses that I can use for the nighttime or if it’s really glary in the day, using them for a bit. The DayMax ones have been a lifesaver, it’s the reason I can type to you now – and yes, I’m wearing them – I’m just so happy I was able to get these so quickly and they’ve worked out so well. My funky FitOvers are a challenge because of my Absolutely Massive Head makes them tight even without other glasses underneath, but I’ve been using them by themselves at night time to read and my eyes have been more… relaxed? Well they aren’t burning out of my skull so that’s good!
I should say I’m not affiliated or sponsored, this is just my own experience!
In other news, the Omicron variant has been let loose here after our borders opened before Christmas so as you can imagine, the supermarket shelves are barren, which made me think of everyone who has digestive issues must be having the worst time, so if that’s you, I hope you’ve been able to cope somehow.
Oh yeah, yogurt was all gone? That was… something!
Panadol (pretty much any paracetamol, followed my ibuprofen in the past few days) is basically non-existent and if you do find some there’s a buying limit, which is a fun thing to find out before a period!
Now that I’ve word-vomited a post out, I hope to be back to some sort of normal, scheduled programming soon.
Stay safe out there!
Although it seems like I’m barely alive most days, which is why I haven’t posted. I’ve been either in bed or in my dark little cave here trying to get some stuff done, however a new extreme photosensitivity or almost any light and fun nerve pain have put everything on hold or to a crawl.
I did however get the process started to try to study next year, however for a disabled person under 35 (just), it means I have to go to a disability service provider (DSP), get a capacity assessment from Centrelink then most likely back to the DSP to get the application started. And this is before I even know I’m getting in. It’s very overwhelming and complicated, but the course will only be $150 for me to do so…!!!
I’m also waiting back to hear from my specialist after sending her an email with all my new symptoms listed inside.
Did you know that if you are on the pill and are getting migraines with auras, you’re at a high risk of stroke? Neiiiiither did I until I saw a tweet last week! This is fun to know after suffering with migraines from my last teens – early twenties until I wasn’t on the pill anymore! And have a family history of strokes!
Along with the stress that is Christmas and other personal things happening, I have been unrested (literally the only word that fits, maybe ‘depleted’ a close second). I hope before Christmas or the year is done to have at least one more post out for you however I can’t make that promise.
If you don’t hear from me, I hope you’re all doing well and that you have some fun and peace in the coming weeks!
Sorry you’re reading this on a public forum and not privately, which I would rather do because it’s weird for other people to peek into conversations, ANYWAY!
Hey, my name is Lucy, I’m from Australia and I’m nearly my mid-30s. We’ve never met. I lived on the west coast of Canada for two years and you’re Canadian, and I think that and being female is the most surface-level similarities we have. I was never a model and am definitely not cool.
But after that terrible introduction, and I’m not the best with words so I hope this all comes out how I intend it to, butI wanted to say I get it. I’ve never had Coolsculpting or anything like that, but I get what you’re feeling; the hiding, the anxiety, the embarrassment at someone seeing you.
For most of my late-teen/young adult life, I was one of two numbers: 57 and 62kg. I didn’t care about it, didn’t look much, was very happy with my 5’2″, 57-62kg frame. I was never self conscious as I believed I was a good weight for my height and frame. As long as I could wear the clothes I liked, nothing else mattered. I never had to care about the things my sister or some of my friends had to but was always making sure I told them how darn great they looked, because they did!
Then around 2014 I was starting to do acting, yay! I always wanted to do acting and start going into possibly working on short films. I was in local theatre shows and was going to workshops (even landed an agent!), my mental health as a result was getting more manageable.
But I was also putting on weight. It was just a little bit, nothing to be concerned of at first, but then none of my clothes fit. I didn’t understand, I was physically active; I was working on a musical, working on a web series and doing workshops, this was the most active I’d been in a long time!
I was also getting in front of camera and.. I looked different. I was getting frazzled and close to the tired I had when I first got chronic fatigue as a teen. Within seven months I had gained 10kg and that had never happened before.
Soon after, I was diagnosed with my sister and mum with hypothyroidism, the endocrine disorder of an underactive thyroid. Okay, no problem, I’m good with taking orders, let’s get it in check. So my sister and mum’s thyroids were becoming managed, and on paper mine was “within current normal levels”, but I was swelling. I wasn’t a sponge, I was like a radioactive marshmallow.
After the workshops and plays ended I focused more on writing and getting things ready for when I could feel better, but mostly look better, AKA Back To Normal.
It didn’t come.
I kept gaining weight. 2015, 2016, 2017.
I stopped appearing behind the camera.
I stopped posting selfies or any photos post 2014 with me in it.
I stopped taking photos of myself, period.
I kept gaining weight, until I was almost double my weight. I had never been self-conscious, but I felt a wrecking ball of it slammed me about every single day. Walking was and is exhausting, not because you have extra weight specifically, but the jiggly bits keep moving your clothes so you’re constantly readjusting because godforbid someone sees a bit of skin over your pants or some of your tum and thinks your a fat slob.
Also, CHAFING? IN AUSTRALIAN HEAT? Get outta here with that shit…
I didn’t recognise my face, my chin had a double chin, and no matter what angle I saw myself I was shocked at what I looked like.
I’m a massive introvert with a whole lotta anxiety and undiagnosed neurodivergence, so I get not wanting to be in public with people, but now I was a recluse, fearing I would see someone I know – or more accurately, they would see me. I was so ready to cut my double chin off, to cut my arms in half and my gut finally gone, and I’m certain if I had the money, not even my normal rigorous research would have stopped be getting some sort of procedure…
Between the end of last year and the start of this year I was able to get not one, but two diagnoses. Polycystic ovarian syndrome, or PCOS, and endometriosis. A real fun combo! It explained not only the weight gain but also other symptoms I’ve been feeling over the years. I’ve been put on some medication and slowly, so painfully slowly and with so much hard effort, I have lost 10kg. Not anywhere close to I want to be, but like my specialist said, “with PCOS, you have to work four times more than others”, and I’m going in the right direction so it’s something!
I still haven’t taken photos or videos and put them online unless they’re old photos. I still am not ready to see old friends or meet new ones. I know my body is different now even when I’m at a better weight for me again; I’m sure I’ll have skin that won’t shrink down to what it was. I’m still exhausted and undiagnosed in other ways. I’m not cured, in a way I never will be, I still have a long way to go and a lot of the time I’m wondering if I’m “too old” by societal standards to do what I want to do. I’m on a disability trying to get mentally and physically better, how long is that going to go on for?
But, yanno, I saw your post, and I had this instant feeling. My heart went out to you because I understood. Like I said, our stories aren’t the same; I’m not well-known, I didn’t have a procedure that gave me adverse effects, but I tell you, every word you said, I bloody got. No one I had talked to in my personal life understood the whole picture (some understood bits n’ pieces from their own life and struggle), but no one got the suddeness of what happened and the aftermath because of it. I just wanted to lunge into the screen and grab your shoulders and tell you “IT’S OKAY! I GET IT, LIND? Sorry do you like to be called “Lind?” Yeah sorry I just came out of your screen, don’t worry it happens all the time..”
I can’t imagine the constant pressure of the whole world looking at me, the very cruel things people can say or think, sometimes wondering if when people say you look great – even a “fine!” – if they really mean it or are just saying it. And when they go over the top with the “you are the most beautiful woman ever in the sea and sky”? Like honestly stop piling it on, you aren’t fooling anyone. That paranoia.
I haven’t seen any recent photos of you, I know there’s unsolicited/paparazzi ones floating around, but they’re not for us to see. I understand when you feel ready, you’ll be 100% ready to show the world what you look like, but at your own time and on your own terms. I’m certain you don’t look anywhere as “deformed” as you think you do, I am certain of that in my heart, but I’m also not going to invalidate how you currently feel because as much as people say “you’re beautiful” and the like, sometimes you just really don’t see it, you feel like their lying or blind. “They’re ridiculous!”
I just want to say that your feelings are allowed to be felt; your feelings of betrayal, embarrassment, even shame, or something else. But feelings aren’t the whole story, hell sometimes they’re not even the partial truth, and you’re more than what you think you are on your worst day.
I guess in a very long way I want to say your Instagram post helped very much, not just me, but thousands of others. I think you’re amazing, I think you’re not alone in any sense. I think you’re so awesome, and wonderful, and I’m rooting for you, and when you want to talk to us more I’ll be there and reading and when you feel confident and ready to share more with us I’ll be somewhere out there cheering for you and so happy for you. So thank you, Linda, thank you, and I hope this letter from this corner of the internet gives you some peace. And maybe laughs, but I’m not a comedian, I’m not even a ‘dian’.
Anyway I’ll shut up now,
Lately I’ve been feeling burnt out. I know I’ve talked about the executive dysfunction I’ve been going through but there’s been something else too, maybe the bigger picture I’ve been stuck in for almost the past year.
I’m sure this post is going to be the laziest post I’ve made!Continue reading “Autistic Burnout: Not Your Mum’s Fatigue”
I think it comes naturally to every single human how we are similar and different from the people around us. Do we like people that are like us or do we seek just enough difference in other people to make things challenging? In a way it ties into that nature vs nurture debate, but we don’t have the time and energy for that whole spiel.
When we talk about anything to do with the mind, there is more curiosity put on whether we’ve inherited certain genes and/or were they fostered, and of course when it comes to neurodivergent people – especially autistic people – sometimes misinformation about other causes comes into play (talking to you, anti-vaxxers).
Anyway because I’ve always been interested in sociology and psychology, and literally anything having to do with What Humans Do, I made my family take IDR Labs 50-Question Autism Spectrum Test*. I don’t think any of us actually enjoyed trying to answer 50 questions, but like the one above, this one does give an interesting and straight-forward look at areas neurotypical and divergent people could be similar or different.
*Yes I am very aware this online test doesn’t hold much weight but it’s for entertainment and curiosity purposesContinue reading “Let’s Look at my Family through the Lens of Autism!”
Hope you’re all doing well. Typing to you in the darkness from a blackout, aren’t storms just really great! Complete sarcasm right there. Couldn’t think of anything more anxiety-inducing than loud thunder.
I’ve been trying to get some posts in order in my free time; I’ve been waiting on a reply before posting something in particular which I think will be interesting. I also entered the SBS Emerging Writers comp about Autistic “Imposter Syndrome” so even if I’m not a finalist I’ll post it here or on The Mighty, not sure yet but I will definitely be posting it for everyone to read.
I hope to be posting something up within the next week at most so thanks for your patience and look after yourselves out there!
Most of this piece was originally written back in July so there is some time jumping and a lot of disjointed thoughts (not including the usual difficulty of expressing what I’m actually trying to say, but hopefully still easy to read!
Lately I’ve been stuck in something other’s might perceive is boredom. Languishing over the same 4 websites with a list of ‘boredom busters’ sitting next to me, my glazed-over eyes looking over at the 3:07pm glowing in the corner of my screen.
My brain almost had the thought ‘I’m so bored’, and to anyone outside this body, I might look bored (being a Millennial makes me practically ooze it from my pores, according to order generations).
I’m not bored though… I’m tired.Continue reading “Bore-hmm”
I did NOT realise how long it’s been!
It was a big July and I’m still trying to get my routine back; something that I’m feeling unfocused and untethered without.
My dad did have his surgery and my sister was able to make it up just afterwards before the borders were closed here due to COVID. However not long after we had to take him to hospital due to severe complications but is now back home with me. The downside of this is he has to take it even easier in his recovery and is still heavily dependent on me, which at the best of times doesn’t leave me much time to sit and focus on any of my own personal stuff.
Aside from this and the whole family debacle that has been plaguing me this year I’m hoping to write something of substance in the next coming days and start to have some form of normalcy!
Just wanted to check in and say I’m just taking a couple of days off as there’s a lot of stuff happening in my personal life I have to attend to but hopefully I’ll be back soon!