Category: About Life (Page 1 of 2)

March 31, 2025 / Elise Carlson / 0 Comments

There are no magical or whizz bang ways to support trans people in this blog. You’ve likely thought of and are doing some already. But as its easy to feel overwhelmed of late, and for us ADHDers to get distracted. So I figure its handy having a list of concrete things we can do to make life any way better for trans people.

Disclaimer; I’m Aussie, nonbinary, and I feel safe marching the streets protesting for trans rights in biological-sex non-conforming clothing. That’s a world away from how I’d feel as a nonbinary person, let alone a trans woman in the US or UK right now. I will try, despite my autistic tendency to have black and white notions of right and wrong, and to respond strongly to injustice, to be realistic here. To give you practical actions to take to support trans people, beyond feeling awful for us or merely saying how awful what’s happening to us in the US and UK is. Because actions give you purpose, purpose is motivating, and knowing you’re having even a small positive impact is a weapon to wield against the apathy or overwhelm that threatens us in the face of great odds.

Listen to & UpLift Trans Voices

The Listening Bit

Honestly, as a nonbinary author who wrote an entire trilogy with a nonbinary character, I’m just waiting for Amazon to hide or remove Ruarnon Trilogy from their digital bookshelves. This is an era in which some people are desperate to erase trans people, and a big part of that is silencing us. If you don’t know any trans people, some of us post sometimes about being trans on social media. I invite you to follow a few trans people who share your interests; books, SFF, fishing —whatever your interests may be. Listen to what we say. Gain some insights into what life looks like from our shoes.

Go further; read some books/ articles/ blogs by trans authors. Watch shows or films (ideally by us) that give insight into what its like to be us. Most of us alive today grew up in a world hugely ignorant of, often denying the existence of, and at times like the present, outright hateful towards trans people. When I identified as nonbinary, a lot of people weren’t sure what I meant. As the most articulate said, ‘That’s outside my experience/ upbringing.’ So bring it inside your experience. Educate yourself.

Anywhere along the road of trans education, Jamie Doger’s youtube channel is a brilliant resource.

The Uplifting Bit

You can do more than. Reposting trans voices on Bsky (yes my favourite social media and hence my example) is simple. Reposting a post, a blog, a podcast or book about trans experiences is a simple way to help us project our voices loud enough to be heard by a wider audience.

If you have a blog, podcast, youtube etc; consider interviewing a trans person who share’s the interest(s) your space is focused on. Consider how you can share the social media space you have to help marginalised people (yes Palestinians, yes immigrants, black people, Asian people, disabled people, Jewish people —any humans some people are trying to step on) to be heard. The more any marginalised humans are known, and understood by more people; the less unknown and ‘scary’ we become.

Hatred thrives on ignorance and lies. Helping marginalised people spread our truths is a means of combatting that head on.
(Yes fellow Aussies; we need more Aboriginal truth telling).

Support Trans Creatives

If you like books, or art; please consider browsing the work of trans authors and artists. Threat of homelessness and living with disability eg. chronic illnesses that severely limits your capacity to work, are two challenges trans people are disproportionately likely to face. And for those who seek it, gender affirming treatment is often prohibitively expensive.

So if you happen to be looking for books or art (yes that you genuinely think you will enjoy), please consider ours!

If you like behind the scenes peaks from artists or writers, eg. short stories, works in progress etc, consider supporting a trans (and or other marginalised) creative via their Patreon, Kofi etc.

Trans Rights

No, don’t bother posting ‘Trans Rights are Human Rights’ on Bsky. Its a left wing platform; we know trans people are human and therefore trans rights are human rights. If you care about trans rights; do something meaningful to support the protection of trans rights.

On The Ground Support; Marches & Protests

Do attend trans rights protests, if you feel physically safe doing so and are physically able. (For the second year running I’m skipping the Transgender Day of Visibility march because my fatigue-plagued body isn’t up to it today). But when you are physically/ safely able; be visible. Show fascists you don’t support them by physically standing with us.

Political Support; Sign Petitions

It takes a few seconds. And requires so little effort. Its a very simple, yet effective way to tell your government (state or national) where you stand on trans rights (and other rights/ climate change). Change.org is a great source of petitions (for any cause). The link I just gave will let you search it (for trans rights and any other causes you feel strongly about).

If you’re looking for current petitions (in your country or globally), maybe paste ‘trans rights petitions’ into the search bar of your browser, or social media to find some to sign.

Tell People in Power to Protect Trans Rights

I know, this one requires a clear head (I haven’t had that due to illness for two weeks). It also needs physical and emotional energy (I’ve been low on spoons) and concentration (damn you ADHD).

I’ve had a draft letter to my federal/ national member for Aussie Parliament in my email for a few weeks. At present, by the time I check facts, I forget my letter’s contents. And when I remember what I’m trying to say; I forget facts. (FYI this is what ADHD/ autistic overload looks like). My spoons are so low that I might need to search the internet for a template that states my concerns, then re-word it to sound like me. (I hear it sounding like you makes it more striking at the receiving end).

But I want to send that letter. I want the person who represents my electorate in my nation’s government to know that I am VERY strongly opposed to any measure that curbs the rights of trans humans. (Hell, maybe I should tell him exactly that!)

Because this step requires extra effort/ spoons/ time; far less people will do it. I think means your letter will speak LOUDER. And speaking loudly to people in power, who can actually impact trans rights, seems a damn good idea at this time.

Don’t Be a Bystander

Don’t put your head in the sand. Or pretend you didn’t hear that comment or ask ‘did they really say that?’. In 2025, if you’re in the US or UK; they did say it. If you’re in Canada, Australia and much of the rest of the world, yeah, there’s a fair chance they did say it. Don’t ask if you just witnessed transphobia (or violence against a woman, for that matter), ask yourself; do I feel comfortable challenging the person disrespecting someone they think is trans? Or am I more comfortable showing my support to a person targeted with transphobia?

I was once on a bus where a man was telling a teenager not to be so loud. At some point the teenager said, ‘I’m autistic’ and the man, who clearly had no understanding of autism whatsoever said, ‘That’s no excuse.’ The man was so obnoxious and arrogant in his ignorance that I didn’t have enough time to respond to him (before the bus reached the next city). But I, and several other people did find words in that brief moment of time for the teenager. Our words were very much along the lines of, ‘It’s entirely his problem. You’ve done nothing wrong.’

What we were really saying was, ‘Only he agrees with him. He doesn’t speak for any of us. We all think you’re fine.’

Demonstrating that the other people on the bus don’t agree with the ableist can help marginalised people feel more secure, in an era that predisposes us to increasing levels of insecurity (and actual physical danger and emotional turmoil).

Tell Transphobes Their Transphobia is NOT ok

Ideally, adults will tell people making transphobic comments in public that its not ok, the same way adults respond to teens bullying a kid in this video. I know; its scarier when the bully is adults, let alone the president of America. But in teaching we have a saying; the standard you ignore is the standard you accept. If I don’t tell a kid speaking to others like that is not ok; I am tacitly telling them it is ok to talk to others like that. In teaching; a behaviour unchallenged is a behaviour accepted.

The scariest thing to me about neo-Nazis turning up to support TERF Posie Parker in MY capital city in 2023, was a neo-Nazi presuming he was defending ‘normies’ from the ‘threat’ trans people’s existence poses. He seemed to assume he was acting in the interests of ordinary Aussies., even as he stood on the steps of my state’s parliament building doing a Nazi salute (which we’ve since passed laws against).

Its all very well to say ‘fuck that, fuck him and fuck Nazis.’ But its far more powerful to show him/ Nazis your opposition by marching in the streets with a ‘respect trans rights’ sign in your hands. To fly a trans flag (anywhere in public). He can’t pretend then. Or deny. He can’t delude himself into thinking many people don’t oppose him because of his refusal to accept, let alone respect the existence of trans humans (and Jewish humans, black humans, disabled humans, etc).

Other Ideas

If its physically safe for you to do so; be bold in your support. Fly a flag. Wear a t-shirt or a pin in public with a clear message of support. Attend performances by trans actors, signers, comedians, choirs etc. Display a sign in a public space.

For my favourite example of the above, a Melbourne bus company has the image and message below on some of their regular buses. Yes, 365 days a year, in a genuine display of allyship, not just for Pride Month.

I’ll end by again stating that being publicly visible in your support of trans people’s existence and rights is invaluable in denying fascists the opportunity, via your silence, to presume their attacks on trans people speak or act for you.

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Related Reading

Identifying as Nonbinary

What Does (Nonbinary, Asexual, Aromantic) Pride Mean To Me?

I Think I’m Neurodiverse. Autism? ADHD?

March 14, 2025 / Elise Carlson / 2 Comments

Like many late in life (in my case self) diagnosed autistic people, I’ve spent my life saturated with sensory overload. For years, I had no idea how much energy I wasted at work filtering out absurd amounts of sensory input. Or why it was so hard to switch off or relax at home. Having finally worked it out, I’ll share how I organise and set up my house (decor, storage and cleaning) and some things at work/ school to minimise visual overload. Whether you are autistic, or you live, work or travel with someone who is or may be autistic, I hope those strategies make their/ your life easier, something we could all do with in the Enshitification Era.

Reducing Sensory Overload At Home

Clutter is Evil

This is a challenge for those of us with autism AND ADHD. For much of my life (before ADHD diagnosis and medication), I left clutter everywhere. It was inevitable, as I A. struggled to focus long enough to finish packing up. And B. always worried I’d forget a more important thing that needed doing. So I was forever running from one task to the next before I inevitably got distracted, leaving small piles of clutter everywhere.

I found early in my teaching career that any chance of relaxing or resting on the weekend was best achieved by tidying on Friday nights. I’d begin by putting dirty clothes in the washing basket, dirty dishes in the dishwasher, and packing away scattered papers and other random objects I wasn’t using.

The more stuff I put out of sight, the more tension I was barely aware of in my torso relaxed. Because I no longer needed to remain poised to escape far too many objects crowding my vision and overwhelming my brain until I struggled to remember or think about anything else. Nor was I overwhelmed by the many categories of thing needing putting away in different locations.

Mess is Also Bad

In recent years, I’ve often been able to only clean one or two things before fatigue or pain begin flare and I have to take the rest of the day off cleaning. This has made me aware of which surfaces I want clean the most. Its always the biggest ones.

If there is a 2cm by 2cm or bigger drop of any substance spilt on the kitchen floor; I notice it. Probably every single time I walk past. Crumbs on the carpet? I know about them! Leaves that blew in the door? Annoy me every time I enter the house! Crumbs/ substances on the bench, in the sink or on the stove stop? I notice most of them, every time I enter the kitchen.

It ANNOYS me. They shouldn’t be there. It doesn’t look good. But most importantly, the energy that gets wasted noticing every crumb, drip and whatever needs wiping or vacuuming on every surface of the house, on top of every piece of furniture and decor within the house is TIRING. I consciously perceive too much visual information. (Which my psychiatrist explained is definitely an ADHD thing, but which I suspect is also an autism thing).

Its impossible to relax in your home when you notice five things that need cleaning/ tidying/ something done about them EVERY SINGLE TIME you enter ANY and ALL rooms of the house. The mere constant sight of a messy/ cluttered house is tiring for me to live in. So if anyone in your home is autistic/ has ADHD; the more frequently you and whoever you live with can vacuum/ sweep/ wipe down surfaces; the better!

Non-Overstimulating Household Set Up

A common cause of frustration for me is difficulty distinguishing between the thing I want and the sea of shit I don’t care about just now surrounding it. The thing I want may be right in front of me. But if its an object on the kitchen table with twenty other objects, my brain may note as many of the twenty objects as it can before getting overloaded and overlooking the thing I want; multiple times. Or it may register the clutter on the table as ‘solid mass of too many bloody objects’ and not differentiate between them.

So I decluttered my house, but the cupboards, wardrobes etc, still contained too much stuff. I never perceive the item at the back of the pantry/ fridge until well after it expires. Because by the time I’d consciously perceived all twenty eight items in front of it; I’m tired and my brain perceives the back row as a vague blur.

Non-Overstimulating Pantry

Only recently did I solve storage problems to my satisfaction. Its tricky in the pantry, because I have three housemates who each have their own grocery shelves. And our shelves are narrow and deep. Storing items in rows seems necessary, but its hard to see behind each row. So I put tall items around the outsides and across the back. And smaller items in front, in a couple of baskets I can lift out to easily perceive (and reach) items in the back row.

This helped, but peering into the pantry was still a visually jarring experience. It was like looking into a room where all the furniture is positioned at contrary angles and some items are incorrectly proportioned in relation to others. None of it is quite what you expect. None of it initially makes sense. Its mental gymnastics just to find the vinegar for your salad dressing (and yes, frustrating).

I do a lot of baking, so I bought tuppleware containers for ingredients that are all the same height. Now every type of flour, sugar, coconut etc doesn’t block or obscure the others. And they fit in a nice row along one side, so I can see what’s in each container. And another daily cause of frustration is now a relief that makes daily life that little bit easier.

(Left before, right after).

3 pantry shelves, the bottom and middle with items piled on top of and in front of each other, crowded to the point its difficult to see or reach anything.

Same three shelves, in neat rows of containers the same shapes and sizes, nothing stacked on top of anything, every item visible all the way to the back.

Non-Overstimulating Crockery/ Glassware etc

Only when we moved house did I notice how unpleasant looking in the cupboard for a glass or bowl was. With a sharehouse of around 8-9 different people over the years; our glassware and crockery was very mismatched. Giving away the worst matching sets and buying new, all the same glasses and crockery sets made those cupboards more calming and pleasant to look at.

Note: if you’re tempted to joke about OCD here; don’t A. trivialise a debilitating condition by reducing it to someone merely wanting their crockery and glassware to match. And don’t B, mock people for wanting matching crockery. In this case, that’s like mocking someone for wearing sunglasses on a glary, sunny day. There’s nothing wrong with making things comfortable to view.

Non-Overstimulating Storage

As a teacher, Christmas tends to include gifts of soaps, bath and skincare products. And as an easily distracted ADHDer, the bathroom is best kept clean when the products I use to clean it are stored in the bathroom. (So I don’t enter the room with the products and forget why I was there, the same applying to the kitchen). So my vanity had lots of unused stuff in it, because my brain mostly registered the contents of the huge drawer as ‘big slab of too much stuff’.

In this case the problem was the vanity was a large drawer, with lots of small things placed side by side, and in rows. With so many things in one place, no manner of arranging them could avoid visual overload. Enter a brother who gives thoughtful gifts and figured a large jewellery box with lots of little drawers could be handy for me to store stuff. With a mini drawer chest, small items went from maybe 60 objects of seven varieties in one space, to 3-4 varieties per drawer, and so few items that I can comfortably perceive them all.

Where possible, I suggest using or buying smaller cupboards/ drawers, in which you can separate objects by category. So that opening a door doesn’t instantly reveal shelves of 50 different objects of 8 types. (I don’t like and am lucky my current house doesn’t have a linen cupboard. That’s always too many shelves for me to look at, let alone perceive the thing I want).

White Space/ Resting Your Eyes

In my new house, one housemate’s room has very little decor on furniture, the walls etc. That room has A LOT of white space. Every direction offers blank, plain emptiness that lets my tendency to see EVERYTHING rest, because there’s nothing to perceive, no visual information to process.

I like having some visual stimulation. But if every book/ decorative item/ plant is as eye level; that’s overwhelming. I only put display items on furniture below eye level, so that when walking around I can focus on what I’m thinking, instead of being bombarded by sight of too much stuff.

Increase White Space, Maximise Cupboards

Two pieces of furniture in my new house reduce visual overload. My old tv cabinet had lead light doors that displayed many spines, images, and endless range of colours and texts of tens of my dvds through its glass doors. My new one has solid timber doors, of one colour of harmonious tones. Now, watching tv is a more relaxing and restful experience.

The other change is a book case. As author and reader I know, the point of lots of lovely books and a bookshelf is to display them. But the spines of many rows of books is the same mass of colours, shapes, text and images as rows of dvd spines. And its location meant I regularly walked past it when not wanting to browse books. Too often, it was a solid, 2m high wall of sensory overload that almost made me flinch in passing.

My new bookcase reduces visual overload by screening two rows of books behind wooden doors. The timber framing the glass doors, frames each edge of the shelf with a single colour. While having a pane of glass and lines of lead between me and the books softens the former wall of too much colour and variety. I don’t feel sad I can’t see all the books all the time. I feel relieved possessions I love no longer silently scream at me every time I walk past.

Pine 2m high bookshelf crammed with books of many colours, different heights and thicknesses, some stacked atop each other.

Antique bookcase with carved cupboard doors and two drawers above them screening three rows of books. Upper section has two timber framed doors with leadlight glass in the middles, greatly reducing the mass of exposed spines and visual overload.

Reducing Visual Overload At Work: School

Walls Covered in Posters/ Charts are Evil

This is a BIG one. Honestly, I look back at classrooms I’ve taught in over the last twelve years and wonder why I’m still sane. Remember what I said about row upon row of pantry items being too many items to process? Or row upon row of book spines being a 2m high wall of sensory overload that silently screams at me?

It may not surprise you that as a teacher I HATE classroom walls. I generally avoid looking at them. They have an unfortunate tendency to be a solid mass of teacher charts and or children’s work; of so many colours, writings, drawings and so many categories. They are TOO MUCH.

Imagine being in a room with twenty something children and all of them are shouting at you for the entire day. Classroom walls have the same stressful, overloading impact on me. And a staffroom with work safety, company policy and whatever else posters all over its walls is little better. So if you have any say in your workplaces walls bombarding people with masses of visual information charts/ posters etc ; please reduce it!

What are Visually Overwhelming Walls Doing to ND Adults/ Kids?

If your wall charts/ posters aren’t vital; I’m wasting energy filtering them out so I don’t get overwhelmed, and can actually do my job. So is the autistic kid in your classroom, or your autistic co-worker. Trust me, same goes for the ADHD kids and co-workers!

And you know what, with that overloading visual sensory input in my face throughout my entire work day, I wonder if I wasted something like 30% of my energy filtering out the visual overload of unnecessary crap on walls. That’s 30% of my energy at work, NOT going into my work. That’s the autistic kid having a meltdown because on top of the input of what all the other kids and the teacher are doing, and trying to keep up while struggling to process social cues; they’re overwhelmed. Its the ADHD kid infinitely distracted, or zoning out, because they too are overwhelmed.

Noise At Work

While this blog focuses on visual overload, which bothers me personally the most, everything I’ve said about the discomfort of visual overload applies to audio overload. Whether a particular person/ appliance/ music etc is too loud, or there are too many voices speaking in the same room making it hard for an autistic person to hear the person speaking to them; audio overload also needs minimising. Luckily headphones, both for the person listening to noise and noise cancelling ones, and other sound proofing options offer relief that visual overload doesn’t have an easy equivalent for.

Minimising Anxiety: Foreknowledge

Even if your companion knows the details, and you’re not normally prone to anxiety; a protest is a good event to minimise anything that might cause anxiety at, especially if you’re neurodiverse. Before you get there, I suggest checking where the protest is, who organised it, what format it takes etc. Do what helps calm us autistic people and arm yourself with foreknowledge of who will be where, doing what, when and how.

If its a type you haven’t been to before (or your first protest); ask around. Get other people to tell you about their experiences to help you know what to expect. A few times in unfamiliar contexts or places recently, I’ve found myself rehearsing what I know will happen, or steps I will take. This has helped me to regulate, remain calm and feel in control in an unfamiliar situation.

Company & ADHD Support To Arrive

A lot of how I’d stay calm, not stressed and not overwhelmed by the crowds comes down to this; try not to attend events alone. The presence of at least one person I know helps me with lots of things.

For a start, I might have trouble reaching the protest. I may be feeling nervous. And with my ADHD tendency towards distractibility, especially if I forgot my meds that morning, its easy to miss my train stop. Its also easy to get streets mixed up, turn to soon or read my map wrong (yes with phone navigation).

Travelling with another person who takes responsibility for navigating takes pressure off me. That alone helps reduce my stress and anxiety levels, and gives me a calmer arrival to the protest.

Company & Preventing Accidents (due to sensory overload)

When you reach the protest, people and signs everywhere and maybe helicopters in the sky, its easy to get distracted or overloaded with sensory information. At Invasion Day I was so distracted (or overloaded) with processing visual sensory info of the crowd that I nearly tripped over concrete bordering tram tracks, having not perceived/ processed it.

Crowds are an information processing challenge for people with autism and or ADHD. So its a good idea to ask your companion(s) to keep an eye out for trip hazards, help you spot them and to explain that you’re likely to overlook them. Its also a good idea to watch out for the crowd parting around obstacles ahead. Had people not stood on benches we had to walk around at Invasion Day, its possible I would have bumped into them too.

Comfort & Sensory Needs

I was lucky my friend was aware I’m nervous as an immunocompromised person of being hundreds or thousands people who could have a respiratory virus that could put me in bed for weeks. This made her aware of my need for personal space and prompted her to find it. And personal space reduced my feelings of being overwhelmed or stressed by people pressing in around me on all sides.

Stand/ Sit Near A Wall

The best space for a neurodiverse or chronically ill person is near a wall. No one can stand in the wall, so you’re guaranteed space on that side. And people don’t tend to pack closely together before the wall. And if the wall is by your side; half the crowd is behind you and you can’t see them. This gives you less likelihood of catching anything from anyone (like the N95 I assume fellow spoonies are wearing). And it reduces the sensory input and distraction of the crowd for autistic people and ADHDers.

But the most important thing about walls for anyone prone to fatigue or pain from prolonged standing is physical support. The Invasion Day rally began with two hours of speeches. I barely managed to stand through the first ten minutes (and I wanted to, because Uncle Garry Folely was speaking and I wanted to show him that respect). I could only stand that long because I was leaning my back fully against the wall and it was relieving my legs of half my weight.

When standing became too much; I sat with my back leaning against the wall. I had space to sit comfortably there and to change my position as needed. You couldn’t do that in the middle of the crowd in the middle of the street.

Chronically Ill & Neurodivergent Guide to Protests/ Public Events

Company, Sensory Overload & Autism Support

Both my parents are autistic and dislike crowds. I think its the novelty and variety of people that my ADHD enjoys about them. My autism doesn’t mind them, but even after a family Christmas I’m TIRED, happy to sit alone and barely speak to anyone for hours. Attending a protest march with hundreds (especially thousands) of people gives me the same weariness. I think its the exhaustion of so many people, clothes, colours, faces, me noticing ALL of it and the energy that takes to process.

Crowds are massively overstimulating and being in one can feel overwhelming. Again, this is where being with at least one person can help. If I’m overwhelmed by all the people, I can focus on the person who’s my company. I even found talking to that friend during the latest march made it feel like it was just us walking down the street. It made me feel MUCH MORE comfortable.

Focusing on the back of the person in front of me or the sign they were carrying, instead of the entire crowded street ahead, also helped me feel less overwhelmed.

Anxiety/ Regulation Aids

As teachers, we know the power of a fidget to give that ADHD kid the stimulation/ dopamine hit they need to focus. We also know the calming benefit of regular, rhythmic movements for heightened and autistic children. Guess what? What helps children calm and self regulate can help adults too.

I didn’t bring fidgets to the Invasion Day speeches, but I was tapping my fingers on my knee to a regular rhythm. Holding a small, discrete fidget could have fulfilled my restless ADHD need to move, even while sitting listening for an hour and fifty minutes. Were I feeling anxious/ overwhelmed by the crowd; again a fidget involving repetitive, rhythmic movement could help calm me.

Mobility Aids

If you’re physically disabled and or hyper mobile, you may already have mobility aids. As a chronically ill person who recovered from long covid only to realise I still had fibromyalgia; I stumbled through chronic pain and fatigue. At work I mostly sat down as often as possible. At home I alternated being on my feet and moving with sitting and resting. But at a protest march its likely you’ll be on your feet for quite some time. So I bought a walking stick, which I’m most likely to use at protest marches (for now).

The Invasion Day march crowd moved too slowly for me. Sometimes my friend and I could step off the road onto the footpath and move at our own pace. But sometimes we couldn’t and like prolonged standing, prolonged slow walking is bad for my fatigue and back ache. For the last fifteen minutes, having a walking stick to lean on would have helped minimise my fatigue and back ache.

Final Note

As we’re conscious of in teaching, its hard too care for others if you are struggling. So try and ensure your comfort as best you can at protests (and in crowded spaces generally), so you can focus your energy on resisting whatever shit your country is/ is at risk of getting badly wrong.

Disability Community

It might seem odd starting with community when this post is mainly about developing awareness of your condition and potential issues navigating medical professionals. But when (to everyone else’s knowledge) you’re the only person you know who, in my case has; ADHD, autism, Fibromyalgia and in 2022 Long Covid; community is important.

This is especially true if you weren’t born with a disability. If, like me, you were just living your life, in my case running 4km multiple times a week, then one day you could barely walk, breathe or think (this is me from able-bodied to Long Covid). For chronic illness later in life, and I imagine any disability resulting from an accident or degenerative disease, its a BIG adjustment. And suddenly a major impact on your life falls outside the knowledge and understanding of most people in it (perhaps everyone you know). That’s where community comes in.

Disability Community- Get One

I learnt a lot about Chronic Fatigue limitations and managing my long covid from 2022 Twitter’s Disability community. I’m now learning from, connecting with and enjoying speaking to people on Blue Sky’s ADHD & Autism Feed, Neurodiverse Feed, Chronic Illness and Disability Feeds. These are totally informal round ups of individual people’s posts, which make it easier to share experiences, complain, commiserate, celebrate with and ask questions of people who ‘get it’/ us.

When I first realised I had Long Covid, it felt less scary seeing that others were in the same boat. This was a new illness, the medical profession had only just begun scratching the surface , no one I knew in real life had the faintest clue, but other people were suffering from it. Other people were living with it. Seeing their posts and reading articles encouraged me that we would find our way. (Took me 2.5 years but I got there –cutting back to part time work was the KEY).

Reading ADHD traits in other people’s daily lives was also validating for me as I sought an ADHD diagnosis, and it helps me feel connected now. Meanwhile seeing what other’s say about how autism impacts them and how I do and don’t relate to other people with autism is also helping me develop my self awareness.

For all four all four types of disability I’ve personally experienced, community has helped. I recommend seeking it on your choice of social media by searching relevant hashtags/ keywords. If relevant, you might want to seek out online or local formal support groups as well.

A Good Doctor

I know, they’re so hard to find —especially in rural areas. And if you have multiple disabilities, there’s the issue of finding a doctor who competently and open-mindedly supports you in managing them ALL. And who does so without being skeptical of one’s existence or biased toward misdiagnosing the other one(s).

For fellow spoonies, there’s also the issue of finding the energy to find a good doctor, if yours isn’t fully adequate. And there can be the need for a doctor who understands the links between conditions. For example maybe that woman doesn’t ‘need’ antidepressants and maybe her anxiety isn’t random, maybe she (and the world) need to adjust to her having autism or ADHD, or both? And maybe her back pain isn’t muscular, maybe its stress from the strain of the above?

Sure, this is just my observations as a person with only personal and second-hand knowledge of such things, but the more I learn, the more it seems your mental, emotional and physical health are interrelated. That any one of those three having an issue can stuff up one or both the others. So if you’ve got multiple ongoing disabilities, you NEED that good doctor who gets the BIG PICTURE for all diagnosis and relevant treatment/ management reasons.

My Doctor Wasn’t Good

I thought I had a good doctor. He listened, he was reassuring, he made me feel comfortable about some other issues that could have been quite serious, but turned out not to be. Then I got long covid. He got me to do standard medical tests, like bloods and an ECG to check my heart ect. When standard tests did not indicate standard (pre-covid) medical conditions, he handed me a survey to ‘explore other options’. Said survery basically asked ‘are you depressed’? in ten different ways. No, I wasn’t depressed. But having my GP try to misdiagnose my obviously physiological illness as depression did cause me anxiety about finding treatment for unknown condition.

He Had to Go

At this time I was fatigued, in chronic chest and back pain and brain fogged. I was teaching full time and very low on spoons. But I was lucky. It was 2022. I knew scientists were only just beginning to study, research and learn what the bloody hell long covid is and what it does to the human body. I knew many doctors could still be very ignorant of this.

But I hadn’t expected to come up against prejudice blocking my path to diagnosis. Luckily my doctor let slip enough for me to suspect that he had long covid, and didn’t want to admit it. And that that bias was compromising his judgement in diagnosing me. It was very clear I needed to walk away. Friends and my mother, whom I spoke to when I had the spoons, backed me fully and I felt empowered to seek a new doctor.

My Experience of Medical Prejudices & Biases

Enter doctor two. Consultation one, my most troubling symptom (which she mainly wanted to hear about, as opposed to symptoms which clearly pointed to long covid) was chronic pain. So, despite my insistence that my mental health was good and depression made zero sense, she prescribed me valium. She pretty much tried to convince me it was depression. One’s a coincidence, two’s a pattern.

This is how I learned there are doctors who prefer to diagnose based on the conditions they personally are most familiar with. That some will ignore any symptoms you name that disagree with their diagnosis (I didn’t have the spoons to test it with doctor two, but for doctor one this was certainly the case). This is when I became aware of doctors who misdiagnose physiological illnesses like long covid and Chronic Fatigue Sydrome, as psychological. Maybe because depression is more common, or more in line with their professional experience, personal bias, whatever. It didn’t help me.

How I Found the Right Doctor

As I said, I was low on spoons and not truly quite ready to accept that this time I knew best, and two doctors didn’t. I took the valium, got home, got angry, threw it in the bin and turned to friends and my mother. Comments from my mother like “but you never take pain killers” really helped me see beyond doubt that this was BAD, physiological and I needed a doctor who understood.

Starting to understand I was fatigued and struggling to find good doctors, my mother got me onto Hot Doc. Its an Australian online booking service with filters that let me search for doctors in my city who specialise in chronic illness. I made an appointment. Doctor three let me talk —probably beyond what he needed to hear for diagnosis because he could see I needed to get it off my chest. Then he said, “That sounds like long covid. But you already knew that?”

Yep, got the one!

I was SO relieved to have a doctor who knew what he was dealing with (I was his fourth long covid patient). He could reassure me that having stumbled for four months on my own I was on the right track with fatigue management. He also have advice on balancing that and exercise, and bothered to test my iron and B12 (both were low) and got me on vitamin supplements.

When I recovered from Long Covid and still had pain and fatigue crashes —he knew Fibromyalgia was a possibility. He correctly diagnosed that and prescribed a pain killer that for the most part kep my chronic pain at bay. (This was while teaching full time. I now work part time and no longer need pain medication. I’ve learnt pain is my body saying ‘fucking stop and rest’ and working no more than two consecutive days a week now, I’m nearly pain free).

Patient Awareness

Medical Malpractice that Could Have Impacted Me

Having had two doctors fail me, I realised it was a good idea to do what little reading I could find the spoons for. At the time it seemed Chronic Fatigue Syndrome was as much a possibility as Long Covid. So when I came across articles about doctors whose outdated —not to mention medically discredited— approach to treating CFS causing harm, I read them.

Luckily Twitter (not yet completely destroyed or corrupted by Musk in 2022) still had doctors tweeting good resources. That’s how I learned about PEM (post exhertional maliaise). And some doctors acting on now discredited beliefs telling patients with Chronic Fatigue Syndrome to exercise, which makes CFS symptoms worse and can cause PEM. I also learnt of the myth CFS sufferers can ‘make themselves better by changing their attitudes,’ outlined and linked to Long Covid scepticism in this article.

By the time I saw my third doctor, I was ready to run away from anyone who told me to ‘exercise and work’ my way out of long covid. Ready to defy out-dated medical advice. Luckily, I didn’t need to. (Though interestingly, with Fibromyalgia, balancing my part time work week with exercise is proving my best defence against fatigue and chronic pain. This is perhaps because I was extremely fit before becoming chronically ill in my mid thirties).

Safeguarding Yourself/ Family

I know, the last thing you need when you’re managing one or more disabilities is safeguarding yourself against a medical professional whose judgement could do you harm. In a world free from racism, misogyny, transphobia etc, that would be easier. Its the last thing you need when when you’ve got a condition that really limits you physically and or emotionally/ mentally. I’m thinking particularly of early Long Covid patients told to exercise which further crippled them with PEM here, but in our imperfect world other circumstances may also apply.

But as I discovered with Long Covid, sometimes you’re unlucky and you’ve either got the wrong doctor, or the wrong doctor to help you manage your particular condition(s). So be aware of and on the look out for red flags.

Trust Yourself and Listen to Those You Trust

So should you feel a medical professional isn’t listening, that their advice is not helping, that their judgement is impaired by any form of prejudice; trust yourself. If it helps and is manageable, keep a record of your symptoms. Know how you were before treatment/ medical advice and after. Have it in writing so you can see for yourself whether treatment is making things better or worse, or which compromise is best. Back yourself up with knowledge of your body so you know when to say ‘no.’

Confession: between brain fog and ADHD I was shit at tracking my symptoms with Long Covid and initially just as bad with Fibromyalgia. But with the Fibro, my awareness of my own body, how much physical activity I can undertake, what kind and how often has been the single greatest factor in improving my quality of life. Similarly, awareness of my ADHD, particularly after I started taking meds, has helped me notice when futile to attempt certain tasks. Knowing yourself helps you help you, and helps inform that good doctor, to help them help you.

I hope you’ve mostly got access to effective, unbiased medical professionals who know what they’re doing. But the rarer and lesser known your condition, it seems the better and more necessary it is to hone your own awareness. And trust that awareness. And communicate it to medical professionals until you get one who listens, understands and work with you as you are are, not merely how they assume/ anticipate you to be.

My Asexuality as a Teen (circa the early 2000’s)

My Asexuality in a (Baptist) Church

I went to church as a teenager. One that very much encouraged people not to engage in any sexual activity until marriage (and then with your marital partner). Other teens had boyfriends or girlfriends. Other teens found sexual restraint a challenge or debated at which level of sexual activity you technically ‘lost your virginity.’

But it was easy for me. I didn’t date. I didn’t feel sexual attraction or even really experience sexual desire (even a romantic desire to be intimate that way) at all. I also didn’t watch or read sexual content because it was foreign and just not part of my life experience. Sex avoidance was easy for me, as I was sexually disinterested.

[SideNote: I stopped attending church at seventeen when I realised I believed humans should fundamentally treat each other with decency and respect (as actual Jesus taught), but I disagreed about ‘original sin’, Satan & hell’s existence and Jesus -aka late Roman empire onwards western religion- being the sole path to ‘salvation’/ heaven.]

My Asexuality at High School

It may not surprise you that I was also sexually oblivious. By my last year of high school, sometimes my friends would laugh or think I was being very cheeky when I said things I thought were innocuous. I had no idea they were interpreting my choice of words in a sexual context.

Some good friends began to recognise this. They would tell me I was being ‘dirty’ and gaze patiently and knowingly at me, often with a smile, until I made the connection. Then I’d be appalled by their sexual mis-interpretation and a bit embarrassed the first few times. But they kept up it and I’d just burst out laughing and swear at them and they would laugh with me.

In hindsight, my high school friends may have noticed I was asexual before I did. They made my lack of sexual awareness part of the humour we shared and our bond. I would call it a positive experience. I felt acknowledged as different and accepted.

No one asked questions, because my lack of awareness —and by extension interest— was obvious. And I was very much one of those teens who was just myself, just different from a lot of people in so many ways (I now use labels: asexual, aromantic, nonbinary and neurodivergent). My friends loved me as I was and my asexuality didn’t really come up outside that circle.

Lack of Sexual & Romantic Feeling

Up until now I’d had ‘crushes’. You know, when you’re attracted to someone’s personality and looks and feel a bit funny in the tummy when they’re around? But that was all. I liked talking to those boys. In hindsight, I could happily have been friends with them. But when one offered me his hand to hold one day, I wasn’t fussed. When he flashed me his chest across the classroom, I took a good solid moment to notice that under his grinning face was his hands, and they were holding up his shirt. And I thought, ‘Ah. You have a six pack. That’s nice. Good for you.’

I just hadn’t experienced sexual attraction, or desire, or even the romantic desire to hold someone’s hand. Kissing scenes in movies confused me, because people would look at each other and then just kiss for no reason. As I started watching more adult television, it was the same thing with sex. They’d just start making out and taking each other’s clothes off for no reason. (To this day, rarely do I see kissing or sex scenes coming unless its a slow burn).

So Dating?

During high school I happily ‘decided to focus on my studies’ instead of boys. I was aware —it was obvious by the final year, when a lot of my friends had girlfriends or boyfriends— that having a romantic and sexual partner was the norm. All fiction and media and my every experience of society told me ‘you will want and seek and find someone to love and have sex with and be your partner in life.’ So at this time, when a friend said she was ‘focusing on her studies’, that was a happy excuse for me not to have to think about romance or dating or sex —because why would I? They didn’t interest me.

Asexuality at University

The excuse of ‘focusing on my studies’ could apply here. And I did have one crush at Uni. But by now I was aware that it was just an excuse. The idea of having a partner sounded nice, but I was fascinated by studying archaeology, writing epic fantasy (the seeds that later grew into the tree that is my debut Ruarnon Trilogy). And I just mostly wasn’t meeting anyone I fancied dating. And it didn’t occur to me to bother spending time seeking them.

So I shelved the ideas of romance and sex both, finished my bachelor of Arts, did Honours in archaeology, realised my dream of travel in Europe and Egypt, then did a Dip Ed.

Asexuality & Alienation From Allosexuals

I lost touch (swiftly) with my allosexual and romantically attracted high school friends when I finished high school. It was sad, but they’d often hang out with their partners, and be all couplesy and all that final year I just felt like we were drifting down completely different paths in life. I didn’t relate to their romantic or sexual attraction, their desire to be with partners etc. I couldn’t connect with them and their partner with me and my (nonexistent) partner. It isn’t easy to be that one single person in a friendship group that’s largely made up of couples.

But Uni was great. I quickly befriended a bunch of single people and at one time had a friendship group. Only four of us did honours in archaeology at my university and that became a friendship group of two (which sadly didn’t last much beyond Uni). And in my first overseas trip: I went on a Contiki tour and met lots of other single people. It wouldn’t be until my 2014 Contiki tour that I made (single) friends I’ve since stayed in touch with on social media and travelled with elsewhere. But it was the beginning of ‘finding my people’ and social circle among single people.

Asexuality as an Adult

Then I was a first year primary school teacher, renting my own two bedroom house in the countryside. I was feeling independent and challenged by teaching (having no idea how disorganised, distractible and what a hyper active —undiagnosed of course— ADHDer I was its astounding I did well those first years!) Teaching took all of my energy. The first serious, major rounds of edits of my epic fantasy took up the rest.

Have You Tried Online Dating?

I bet aromantic, and quite a few asexual people have heard this question A LOT. The allosexual, romantically attracted population (most of humanity) all seem to assume (as the media, fiction, society etc assumes) that EVERYONE wants someone to love and have sex with and be their partner in life. And when you’re in your late twenties and are showing no sign of seeking that person out, you can get a lot of encouragement to do so online.

So I did. I reached the point of intellectual curiosity about the human experience that I decided dating was something to explore. I joined a site and read testimonies of people ‘excited to wake up and see their daily matches’ with either disbelief or “Yah-NAH!” (which is Aussie for definitely not). I found looking at men’s profiles boring. (It may have been interesting if nonbinary was a thing and I could browse nonbinary profiles too, but cis men profiles bored me).

So I just let men message me because it was a boring waste of my time so why put energy into online dating? Someone did find me. We messaged and went on a few dates. I liked him.

I Don’t Reciprocate (Romantically or Sexually)

I was twenty seven by now. That nagging suspicion I’d had in high school when boys liked me that they always liked me more than I liked them was about to become clear. He was more attracted me. He was sexually attracted to me. He was very attracted to me as a person.

He wanted to hold my hand, kiss me and had I been happy to, he would have happily had sex with me early on. Holding hands was nice. Kissing was nice. Hugging was nice. But it wasn’t much more than that for me emotionally. I was still at the point of starting to like him. I didn’t mind receiving affection, but I didn’t have the emotional connection or desire to initiate it at this stage. It might me MONTHS before I liked, let alone loved him enough for that.

And it was very clear he was sexually attracted to me and that I wasn’t sexually attracted to him. He clearly liked sex, but I wasn’t ready to go there any time soon. And he was fine with that and happy to slow down.

Dating was fun, dizzying and it was interesting trying something new. But it was clear from the outset that in no respect did I feel as strongly about him. That I didn’t connect with him the way he connected with me. And it occurred to me that I may not do so. That perhaps I don’t work that way. That my suspicion relationships with men would, as I wondered as a teen, just break their hearts.

Single Life

I was lucky. He got a job he’d wanted for a long time, one that meant he’d be out of town for two thirds of the year. And we’d been talking online for two months before dating because he’d been out of town then. He was happy to keep seeing me, but it was up to me. Luckily, while much of the above wasn’t very clear to me yet, it was clear that with long distance dating I’d take ages to get to know him. That I’d rather do that in-person and wasn’t interested in a long distance relationship. So we went our separate ways on amicable terms.

What’s Next On my Bucket List?

Yep, that was my first thought when I stopped seeing the guy. I’d satiated my curiosity about dating, got a little bit of personal insight into romantic relationships, sexual attraction, romantic affection etc. I’d enhanced my capacity to relate to most of the rest of humanity. I was ready to delete my dating profile and focus my life on other things.

Which was great, because I got severe burnout that forth year of reapplying for another one year teaching contract —at that time a highly competitive, rigorous process. I moved to England to teach, travel and write epic fantasy on holidays for two years. I came to back to Australia to teach and went to New Zealand to do the same, flew home because it was 2020 and lived and taught back in Australia again.

To my surprise, I met someone else I found very attractive. Mature, smart, passionate about life, energetic and who shared my love of children. And I wondered, would I ever want to be more than best friends with this person? And I answered myself; I don’t think so. Hypothetically, would I ever want to have sex with them? And I realised; I would if they initiated it and wanted to. But circumstances (note I kept switching countries from 2014-2020) didn’t see us together and that was ok.

How My Asexual, Aromantic Life Looks Now

I’m not someone who feels romantic or sexual attraction. I don’t generally desire physical affection either. I don’t mind receiving it and I might hug people goodbye if everyone else is. But mainly I just hug my parents when I visit them and don’t feel the need to hug or be held by anyone (though it might have been nice during Long covid and Fibromalgia crashes, as being held or having my back stroked ease the feeling of fire those two conditions could cause in my back).

I don’t experience sexual desire (or any form of arousal —unless I stumble across a tv show/ book I like for other reasons that I didn’t realise would get that spicy or someone else tries to seduce me —its a rare and bold man who takes on that challenge!)

I’m as happily single as I’ve always been, with single (and yes, quite possibly also asexual and aromantic) housemates, single friends, and lots of writer friends I can interact with one on one online, without my not-being-part-of-a-couple getting in the way of our social connection.

Wherever my fellow aces lie on the asexual spectrum, and however much our experiences and exact asexual identities may differ, I’ve hope you’ve found a similar place of contentment socially (romantically and or sexually if you do either) and in your social circle.

Strategy Number 1: Clarify (and play for time)

I don’t just need additional context because I’m neurodivergent. I rarely speak to parents, so I have little knowledge of them and their concerns. Even as a neurotypical person I might not anticipate what they’re asking about. So when they finish talking, I try to summarise their main concern and confirm it by asking, “Is that your concern? Are you also wondering about x?” Or, “So you’d like to know about Y? Is there anything else you’d like to know about that?”

Summarising and asking clarifying questions helps me ensure I have perceived the person’s main message (I tend to clutch at side points when I’m put on the spot), and gives me time to process. Only then do I stand a chance of recalling my usual answer to that sort of question (as an experienced teacher I’m lucky to have a bank of these from past experience). It also gives me time and mental space to connect what they are saying with what I know about the topic, to form my answer. Not to mention, clarifying what the other person is saying signals clearly that you are listening, interested in what they have to say and are keen to understand and help them, all good things to signal.

Strategy 2: Play for Time

If I’m having a casual one on one conversation, especially start of the day ones with students where there’s no contextual clues of what they’re talking about, again, I need time to process. I usually seize on a single piece of what they said, and comment on it, encouraging them to elaborate. While they elaborate, I’m processing, connecting the trip to Sydney to visiting their grandparents and that being why the child is excited. This isn’t a one off for me. It happens in MANY conversations where I’m not given multiple contextual clues.

Note for neurotypical people: If you’re ever chatting to someone and you think the point the other person chose to comment on is random, or not your main point, don’t go feeling misunderstood: elaborate. Adults are so time poor these days that I feel like we often start our conversations in the middle. Even a busy neurotypical person may benefit from, “You know how I was visiting my grandmother because she was sick last week? Well it turns out…”

Strategy 3: Ask ‘Stupid’ Questions

Sometimes in the staff room a colleague asks another, “Did you get those times sorted?” In most contexts that means nothing to me. “Times for what?” No, it doesn’t matter that the last conversation I had with that person was about times. That conversation was two hours ago and my head is full of the teaching I did in between. I need to be asked, “Did you get the times for little Jimmy’s parent-teacher interview sorted?”

I’ve always thought it was magic how most of my colleagues can answer questions like that with zero context, when I mostly can’t. When people ask me questions at a time and about a thing or in a location I don’t expect it, I need at least three contextual clues to know what they’re on about. And because teachers spend most of our time working with students, and many of our conversations are rushed between preparing lessons, meetings, yard duty, paperwork etc; my colleagues rarely give me context. So I’m learning to respond to questions with: “Are you talking about x?”

Note for Neurotypicals: Hyper focus makes context a necessity for me. Hyper focus means my focus is on my world building my novel set in a roughly Bronze Age era, fantasy world. So if you’re asking me about real world, modern day politics in America, I’ll first assume you’re asking about Umarinaris politics during Ruarnon’s reign. Then I might realise you mean modern politics, but modern politics has dickheads in every country (and I’m in Australia, so I may or may not assume Australia first), so which modern country’s political dickheads are you referring to? Give me context!

Processing Strategies

Strategy 1: Go With the Flow

Many writers joke about how much they procrastinate. But when I wake up on a Saturday morning, spend two to three hours bouncing around on social media, then go for a walk (possibly a drive first): I’m not procrastinating. I’m letting my restless, highly distractible brain do its ping pong thing. That involves letting it bounce towards whatever interests it, in any order, forget things, bounce to the next, then circle back.

I let my brain go with its flow. Then I walk and do housework to exercise off the physical restlessness and calm my mind. On Saturday night I watch tv or read, or ease into writing with a blog (like I’m doing right now) or a newsletter. Then on Sunday: I’m ready to write or edit some chapters.

This is what I mean when I say ‘go with the flow’. My brain isn’t linear. It may not finish one thought before it rushes to the next, and the next. It may have two lines of thought simultaneously.

Throughout the Day

But at work I HAVE to slow down. Through sheer will and discipline developed over years, I try to explicitly teach a single line of thought, to make learning accessible to my students. And during the day I force myself to, as much as possible, get all my lesson structure timings right and work to the school timetable and bells.

Once the kids go home, I let myself pack up and organise five different things at once. I forget the first, get distracted by the sixth, re-discover the first and so on. I’ve learned to keep looking around, and circling back each time I finish or get distracted from something, to see what else I’m still working on. Letting my brain go with its natural, chaotic flow when I’m tired takes a lot less effort than forcing myself to linearly do one thing at a time.

So with teaching and writing, I don’t fight or jam my brain into a neurotrypical mold. Wherever possible whilst actually getting things done, I let it march to the beat of its own erratic drum. Then I circle round to catch the things I got distracted from and forgot about before/ during completing them.

Strategy 2: To Do Lists

I laughed when people first mentioned these to me. What’s the point of a to do list? I lose the list LONG before I finish half the things on it. And I don’t remember to tick anything off, so I don’t experience the satisfaction of completing things, I just rush headlong into the next five. But editing the chaos of my novels and recalling the many jobs of different types juggled after hours in teaching was too much.

My new system is paper sticky notes. I don’t keep re-reading or ticking things off because that can get overwhelming and stressful. If I think I haven’t written something down, I just write it again and throw the notes in a pile so I don’t lose them. Once a week (there is a particular day where I have more time), I go over less urgent notes to do and cross their items off. Then I re-write the outstanding jobs in order of when they need to be done. That works for me.

For editing novels, instead of losing my edit notes, I type edit notes above each chapter in the draft. And I write notes that apply to the whole book before the first page, and re-read them periodically.

What Works For You?

For keeping track of things authoring and teaching, its been about listening to others, trialling things, identifying why things won’t work, figuring out what does, and being disciplined, stubborn, determined etc to plug the gaps. This is a good time to shout that its about figuring out what works for you and why, or what makes things harder, or stresses you out and why. And from there: what could make life easier for you?

Ideally we all got diagnosed as kids and had loads of strategies by adulthood, but the 90’s, naughties and earlier let us down big time on that front, so there are many women and nonbinary people and some men playing catch up. Good news though: its never too late to learn or to make your life easier!

Strategy 3: Ask For Help

I’m an impatient, adventurous but also a lone wolf type of person. I just want to dive in and get everything done fast (the best time for me to do anything was often yesterday, and sometimes last week. Failing that, its today.)

Sometimes I move too quick and overlook things multiple times. A classic example is supermarkets, where I can walk up and down the same aisle four times and not notice the item I want. Not only do I ask a staff member to tell me which aisle, but even how far down, or between what or even to point directly to it. I tell them, “I’m sorry, I have visual processing issues and I can’t seem to spot that one thing amongst the other stuff. Could you point to the shelf for me?” ‘Stupid question’ but it really helps.

My Mental Health Strategies

In conversation with others, I noticed how good luck and the benefits of other struggles in my life have positioned me well to manage my ADHD and autism from a mental health perspective. People with ADHD and or autism are statistically more likely to struggle with depression and anxiety, but for most of my life I’ve dodged both. So it seems a good focus for the third section of this blog. (Apologies fellow neurodiverse people, likely nothing in this section is easy and a good chunk works well for me because my experiences and personality predispositions align well).

Strategy 1: Accept What I Cannot Do

I’m realising in conversations with people who are self diagnosing as late in life as I am that I’ve been very fortunate. Some people I know have been carefully masking, measuring themselves up against neurotypicals and berating themselves for not being able to function like neurotypicals their whole lives. I haven’t had that struggle.

When I was around twenty I remember thinking, I’m an adult now. I should be able to do things like navigate to some place I’ve never been and get there on time. I couldn’t. Remembering to leave time for traffic, find a car park, get from car to venue etc is boring. I’m restless, impatient and easily distracted. All I knew back then was I struggled (and still do sometimes) in the moment to recall and allow for ALL the factors that allow you to get somewhere unfamiliar on time.

And I thought: most people with at least half a brain find this easy. I have more than half a brain but find it virtually impossible. I don’t know why or if I will ever know. So rather than be upset about something I can’t change, I’m just going to accept that I randomly suck at some things for no apparent reason. I’ll accept it as one of my quirks, enjoy getting lost, not sweat about being late and laugh it off.

Strategy 2: Don’t Compare Myself to Others

This was probably easy because I’ve rarely ever measured myself against my peers. I don’t date, or have my own kids so there’s no point of comparison as a partner or parent. As a nonbinary person I never cared much about the type of ‘man’, or ‘woman’ I am. I’ve met few nonbinary people, all recently, and as an umbrella term for multiple genders its hard to compare yourself to another nonbinary person anyway, so I didn’t care how my gender and that part of my identity compared to anyone.

When it came to my brain working differently and me behaving or struggling to do certain things in certain situations, I figured that’s just my quirks. I’m unlike many people in many ways, and in these particular ways I suck at things others can do easily. I didn’t suck enough to not be capable of what I want to do in life, it just made many things I wanted to do (like being a teacher and writing novels) A LOT harder and made me look clumsy. So the only times I compared myself to others and masked my ADHD and autism was when I worried it might raise questions about my competence at work (after I’d had years to settle in as a graduate teacher).

Strategy 3: Be Open About My Limitations At Work

I had no choice with this recently at work. The more boxes, colours and types of information a form collects, the more impossible I find it to perceive the whole form. Red hurts my eyes. White print on colour is hard to read correctly. And the more information jammed into more boxes, the more my brain shuts everything out to prevent being overloaded and doesn’t even realise it isn’t perceiving everything. I suspect this is a strategy my brain sub-consciously developed to minimise stress levels and help me avoid meltdowns.

The above became clear when I fell on my face doing a ridiculous amount of paperwork my colleagues found challenging but achievable that I found impossible earlier this year.

Whether or not your boss and colleagues believe you, understand you or appreciate the challenges you face at work makes a huge difference. I’ve been very lucky. And with understanding of my needs, I could develop strategies and work could put supports in place so that what was inaccessible to my neurodiverse brain became workable. (Though it was still exhausting -needlessly, because the organisation who produced the paperwork doesn’t understand how inaccessible they made it to people like me and don’t seem interested in learning.)

Had I not been open and honest about having visual and general processing challenges in completing paperwork, I could have been accused of being careless, lazy, incompetent etc. I was privledged that my bosses could be trusted with the truth of my neurodiversity (and chronic illness). And that they were willing to listen to how, between neurodiversity and chronic illness, I faced many significant obstacles in the workplace that my colleagues didn’t and they were genuinely prepared to support me with that.

Strategy 4: Be Open About My Limitations At Home

Again, I’ve been lucky. For my first three years as a teacher I lived alone in my own house, as chaotically as I wanted while I figured everything out. By the time I moved into a sharehouse, I had a fair idea of how to organise cleaning and other things that could annoy my housemates.

I’ve been clear about systems that help me succeed with housemates. For eg. bills are printed and stuck to my fridge (the one my food is in) and we sign when we’ve paid our share. Because if our bills are shared digitally, the infinite distractions on the internet mean I’ll forget the bill exists each time I close the tab I saw it in. On the fridge there are no distractions and I see it each time I enter the kitchen, creating the eight or so opportunities I need to remember to actually get as far as paying before being distracted by something else. I move a device into the kitchen, so when I bounce between tabs and forget what I’m doing, my physical location reminds me to pay a bill.

One housemate circles the cost and writes what each of us owe on bills, so I don’t get lost sifting through too many words and miss important details, like whether its gas or electricity (the first five or so times I look at it, out of impatience and restlessness).

I’ve also mentioned that I’m a light sleeper with sensitive hearing, and headphones or background noise exacerbate the ringing in my ears. I ask my housemates not to shower after 11pm (my room is next to the bathroom) or be cooking and banging pots and pans at 1am (I’m also near the kitchen). My housemates are good with this.

Key Points for Neurotypicals

Give the person you’re speaking to, especially if you’re asking them a question, context, each time you change the conversation topic.
Give people time to process what you’re saying or asking. If after a pause they still don’t respond, give them more information, in case they’re still unclear (and possibly feeling stupid for being so).
Please be patient and remember that its not that we don’t care. ADHD brains are distractible, impatient and can be impulsive. We will forget things temporarily, often because there’s too many things going on in our heads at once and we don’t have your capacity to focus on only one of them (without a massive struggle). Which one are you referring to?
Thanks for taking an interest in and being willing to learn about what life can be like for neurodiverse people, in particular ADHDers. You being informed and trying to understand can make a big difference in your interactions with us, how we are perceived and ultimately on our wellbeing.

Key Points for Neurodiverse People

It’s ok to ask ‘stupid questions,’ restate and clarify what others are saying and to ask for time to process information. Its also ok to ask if you can get back to someone at a later time. You are allowed to take the time you need to process the situation, even and most especially when that timing doesn’t match neurotypical expectations.
Figure out how your brain works best. Develop strategies that work with and support your brain where possible, and that scaffold your brain where it struggles. Talking to other ND people may help, but we, our brains and circumstances vary and you’ll need to figure out what works best for you.
It may seem I’m asking you for the sun AND the moon, but we need to accept what we can and can’t do and make our peace with it to be content in life. This includes not comparing ourselves to neurotypicals and not beating ourselves up for not measuring up to or not meeting neurotypical expectations. This world was not designed for us and that is NOT our fault.
If it is safe to do so and people at your work and home are willing to listen and are receptive to your words, tell them honestly what you struggle with. Tell them (when you’ve figured it out) how your brain makes some things difficult, and what they and you can do to make things easier.
Best of luck finding strategies that work for you!

Pride Right Now

Two large rainbows arch over grassy Arthur's seat, before sunlit Edinburgh and a grey, cloudy sky in Scottland.

Pride At Work

I haven’t mentioned that its Pride Month at work. Work has been insanely busy, we’re all sick and there’s hardly a moment or the headspace to comment on something that isn’t work. I’m also the only openly queer person in my workspace and while my colleagues are kind, well meaning people, there’s a lot of ignorance. I’m not sure how much interest there is for things queer or how to proceed when I’m the only person flying the rainbow flag before all my cishet colleagues.

Pride Online

So I’m mostly seeing Pride online, packed with corporate performative allyship posts, and ‘love is love’ and ‘lets work together to make things better.’ And the cynical part of me wonders if that post is the only thing that organisation will do during Pride month (or ever), to support queer people. I’m sure some groups do more, but it almost feels like being accepting of queer people is politically correct, and socially and morally obliged, and mass displays of it at this one time of year can feel insincere.

On the flip side, so many organisations publicly displaying their acceptance of queer people does, as many recent tweets have pointed out, show the haters that hating on queer people isn’t the norm. That such hatred is unwelcome in many spaces. And while that causes initial inevitable backlash (which I’m fortunate enough to have only seen online, not irl), I share the optimism that it will ultimately help normalise being queer (especially being trans!).

Indie Author Pride Online

I was grateful when Indie Book Spotlight started #IndiePride2 and I had a means of connecting with fellow queer authors. One of the prompt questions was: what does Pride mean to you? To some on the hashtag, its a celebration of how far queer people and our status in society has come. From being gay being illegal and legally defined as a mental illness, to gay marriage being legalised in many countries, for example. But also a time to protest, and to look at what still needs to be achieved. I’d define that partly as every homophobic argument made against gay men in the 80’s/ 90’s now being argued against trans people, and the legislative assault trans people are coming under, in Florida and California in particular.

Reaching Pride, Space to Be Queer

But before discussing the present and future, I’d like to look back to how I personally and many others came to the realisation we are queer, and Pride is for us. Because things don’t just happen in a vacuum, and many of us were unable to recognise our identities for a long time, because to us our world was a vacuume.

Queerness in The 90’s

I had no idea I was queer as a child. I played with girls. I played with boys. I played with girls and boys toys. I liked pretty clothes and pragmatic clothes. And like many 90’s kids, I knew you could be gay or straight. And that was about it. It didn’t stop me from punching bullies back. ‘Girls didn’t do that’, and I ‘was a girl’ in everyone else’s eyes. But I saw the world as I saw it, I thought what I thought, felt what I felt, believed what I believed and would not tolerate shit I would not tolerate. I demanded male respect while presenting as female in a sexist era. I suppose in some ways I was ‘one of the boys’ and in others ‘one of the girls’ and nowhere did I truly fit.

Queerness in The 2000’s

‘Transexual’ was mentioned a little more then. The notion of a ‘man in a woman’s body’ and you could ‘get a sex change’. It was such early days for gender diversity. There were still such rigid expectations for women. Slut shaming was still at full throttle. But the ‘metrosexual’ was coined. Men were starting to break free of recent limitations in male gender expression, some growing their hair out, experimenting with make up, etc. And that helped me, because I realised those men were more feminine than I, and I more masculine than them. There was a little more space for me to recognise my own gender diversity.

Of course, there was still nothing like a single role model of anyone I wanted to be when I grew up. Because the gender binary was still an absolute power. But Blink 182 were rocking the charts alongside ‘metrosexual’ male artists and there seemed a little more room for queer existence than before. I even heard the terms ‘bisexual’ and ‘lesbian’. By my late teens, people were starting to say that using ‘gay’ as an insult was disrespectful to gay men and were beginning to discourage others from doing so.

It felt like millennials were starting to make and or create space to be alternative. To break away from the mainstream. Including to be queer. But so many queer labels and identities were so little, or not even understood, that for many of us, this was a time where we struggled to be what we could not see.

You Can’t Be What You Can’t See

Let me put not having labels or definitions for who I was into context. When I was 10 years old (in the 90s), I went to a family event and a male relative was there with a friend of his. My dad quietly told me, “That’s his boyfriend.” By the early 2000’s, another family member had joined the Melbourne Gay and Lesbian choir, and attending that choir’s Christmas Carols for several years became a family tradition.

I had the privilege of being raised in a family where queer family members who recognised themselves as such were welcomed, and where Pride was totally accepted. It was a very safe environment for me to ‘come out.’ But it wasn’t enough. ‘Gay’ meant loving the opposite or opposite and same sex back then. It didn’t mean not romantically loving anyone. It didn’t mean not experiencing sexual attraction. ‘Everyone’ in fiction, on tv, in books, in the movies, in real life ‘wanted’ a girlfriend/ boyfriend, and ‘wanted’ to have sex with them, sometimes on the first meeting, which I always found absurd. And ‘everyone’ everywhere ‘was a man or a woman.’

So What Am I?

Its very challenging to be proud of who you are, when you don’t even have names for the things you are. (Trust me, I’ve spent over 30 years trying to do just that ?). I respected gays, lesbians and bisexuals. I liked how they just did their thing, despite peer pressure, despite prejudice. That they went out every day defying what most people expected them to be, and were just themselves. I tried to do the same, on my own, with no role modelling what so ever, because I didn’t have labels or a clear definition of who I was, nor any examples about how to express myself as a person.

Pride as Living Space

So how can anyone be queer when you’re queer in a way that’s ‘not a thing’? Let alone how do you be proud about it? If I felt masculine, I did masculine. If I liked a guy but didn’t actually want to ask him out, or even date him, I didn’t ask him out and tried not to encourage him too much. I slowly clawed my way towards a wardrobe balancing feminine and gender neutral attire. I wrote books from female and male perspectives, alternating between them as much as I wanted.

But I didn’t gain clarity about who I was, or how to more happily be me, until I started seeing others trying to do the same. I shrugged off the many people suggesting I try online dating because ‘surely I must want a romantic and sexual partner because isn’t that what every human wants’? I moved house, country etc (surrendering to the ADHD desire for novelty and challenges, long before recognising I had ADHD ‘only boys had ADHD in the 90s’ ?). That was a convenient excuse for never bothering to date, because I never lived anywhere long. But neither I nor anyone else had terms for what I was, so they kept expecting me to want what I didn’t want.

Pride as You Can Be Who You Can See

I know many people are wary of politics on Twitter, or fear it as a hellscape, even before current management took over. But Twitter was where I found Pride. No, not the month. Pride as in people who put things in their bios like ‘asexual’ or even… they/them pronouns. I started meeting and interacting with people who were queer beyond being same or same and opposite sex attracted. I learnt from them and we learnt from each other that there are so many other queer identities. That humanity has far more ways of being than the exceptionally limited cookie cutters society had been jamming us all into since childhood, despite plenty of us never fitting.

As I said in my blog Identifying as Nonbinary, identifying my pronouns and telling them to other people was an outward way to give myself permission to be my nonbinary self. To wear feminine, masculine or gender neutral clothing. To relate to other people as just a person, even and especially when they want to relate to each other and everyone else as ‘woman’ or ‘man.’

Many in my queer generation (and earlier generations) have had to overcome the disconnect between blundering through the dark to define and express ourselves and society inventing names for us 20, 30 even 40 years later. You have this vague sense of who you are and how to be you, and then these external, ‘foreign’ labels and gender identities pop up, and it can take years for you to realise you are that thing and it is a part of you.

Pride to Save Time

Let’s fast forward to the present. Now its not just Gay & Lesbian, its LGBTQIA+. Not only can you be bisexual, you can be pansexual. You can be aromantic, or asexual or demisexual. Its trans people now, trans men and women, a gender appropriately named as a gender and not lumped in with the word ‘sexual’ even though it isn’t a sexuality. And you can be nonbinary, and gender queer and agender and SO MANY things. And with names, and definitions and books like Heart Stopper and shows like Umbrella Academy, people can see their gender and sexuality in fiction. With safe online spaces and pronouns and sexualities in bios, people can see diversity in online life.

Its no longer necessary to blunder through the dark. There are names to go with identities, and fictional and real life people to look to as examples. Its easier than ever to find your queer people, to not be alone. To have people to share experiences and challenges with. To ask questions of. To find your way on your journey of being and expressing your authentic self with.

And then there’s the bigots.

Get Back in the Closest

Yes, that’s exactly what a religious nut job recently told me, right after accusing me personally of turning western civilisation into a circus for daring to encourage, via public tweet, people to live as their queer selves. Its easy to laugh off extremists like that. And people running around saying, “the Bible says its a sin, don’t be proud to be queer” when the supposed lord and saviour of these supposed Christians said stuff like “let he who is without sin throw the first stone” and something about attending to the plank in one’s own eye before attending to the speck in one’s neighbour’s. And who, despite popular opinion in some circles that he said “hate thy neighbour” actually said “love thy neighbour as thyself.”

But Pride Month had barely began before the book What is a Woman, so packed full of attacks on trans people’s existence that I soon forgot it supposedly related to women, was released. And people are tweeting about ‘Family Pride Month,’ you know, ‘family’ as defined by bigots, in opposition to all things queer. Then there’s the ‘when do we get straight pride month?’ crowd, who are so used to everything always being about them that a whole month dedicated to someone else is apparently more than they can cope with.

A lot of the above may just be noise. But the 369 anti-trans bills currently active in the United States are not. These bills include things like denying teachers and students the right to be addressed by pronouns not matching their biological sex on their birth certificate (which would misgender me). They include limiting gender affirming care (care which spares people being trapped in a body that every time you see its reflection isn’t you, because it doesn’t match your gender, aka dysmorphia).

I’ve been very lucky with dysmorphia. My body is a mix of classic masculine and feminine traits. Only seeing myself on film do I see someone whose face or expressions aren’t right, or their voice sounds wrong. Its like watching a mockery of myself, when it is actual footage of me. I wouldn’t wish that on anyone. To wish, let alone force dysmorphia on people is to wish them mental illness and self harm. And that’s exactly what Desantis seems to be praying to God for trans people to have.

The Future

So much has been gained in recent decades. Pride Month seems to get bigger each year. And yes, it is nice to say ‘happy Pride!’ and to celebrate all the queer community is and has achieved. And queer joy can be a rare thing, so much so that I don’t feel I can enter my queer ownvoices book in an author contest specifically for queer authors, because the contest is for books about “the struggle to be queer in the modern world”. So yes, there’s room to celebrate, for queer joy and plenty to be PROUD of.

But its the fight that sticks with me in 2023. This map of countries where its illegal to be queer won’t surprise experienced travellers like myself. But even to a casual observer, people referring to all LGBTQIA+ people as groomers (see Twitter) and claiming all of us are pedeophiles (see #NotADragQueen for convicted, actual child sex offenders) looks to me like people getting their ducks in a row before they shoot them. What is a Woman was described in this partly theatrical, but also thoroughly researched documentary as a rallying cry to incite hatred of and violence towards trans people. Having watched her full analysis of the book, I agree with Jessie Earl’s interpretation of it.

Yet so many bigoted morons on Twitter are tweeting ‘what rights are trans people being denied?’ Meanwhile a certain rich white woman would like everyone to believe cis women are victimised by the existence of trans women. And so many misogynists are happy to ‘defend’ TERFs against the existence of trans women (including literal, self identified fascists in my own city).

Pride to me?

In his monologue in June 2022, First Australian Mene Wyatt said “silence is violence.” A blog about Melbourne’s fascists expressed the view that most people, whom it called ‘normies’ truly oppose the ‘evil transes’. If fascists like that don’t hear people articulating that we actually don’t think trans people should be eradicated (yes, the Melbourne fascist banner called for exactly that), than Mene Wyatt is right. We’ll have haters committing violence in the name of ‘normal people’/ the bulk of the human population against LGBTQIA+ people —trans people first.

So to me, Pride is my chance to say: don’t let fascists presume they speak for you. Tell people where you stand. So no one can falsely claim to speak for you. Don’t be silent and let others believe they are committing violence in your name. (Fellow Aussies, we can use our voices to VOTE YES in the Voice Referendum, while we’re on the subject ?). Yes, things have come far for us queer folks and that’s great. But I want to see everything we’ve gained and so many have worked so hard for weather the current storm, futuresurvive and thrive.

Neurodivergent Self Diagnosis. ADHD? Autistic?

March 15, 2023 / Elise Carlson / 0 Comments

I’ve never considered myself to be ‘normal’ or ‘just like everyone else’. When you’re a nonbinary person, and an asexual, aromantic in a world of binary gender adults interested in romantic relationships and sex —you don’t fit. You often don’t quite present, sound or act like most people. But as I try to iron out creases that trip me up in my teaching career, and talk to neurodiverse friends on social media, I’m seeing another set of differences in how I think, feel and function that also set me apart. I Think I’m Neurodivergent (ADHD being the likely candidate).

Neurodiverse Communication

Rehearsing Conversations

I’m guessing neurotypical people rehearse conversations in their heads when they’re giving a speech, or telling someone they really care about something that really matters to them. By the time I was around fifteen, I rehearsed ANYTHING and EVERYTHING I may like to say to my friends before saying it aloud. I would approach social situations with prepared topics and comments drafted in my brain and would be happy when I got to say them all.

Did I monitor the interest levels of people as I plunged through my pre-rehearsed topics? Not really. Sometimes when I’d finished talking I did. Knowing how much to say about a topic and not rambling on when the other person isn’t as interested as me is a life skill I am still refining, in my thirties.

What are You on About?

As a teenager, I routinely initiated conversations with peers because it was the easiest way to communicate. Even as an adult I find other people starting the conversation challenging. With people I don’t know well, the first thing I think they’re saying usually isn’t what they mean. I’ve developed a habit of listening, ignoring my first interpretation, and waiting until a second or third interpretation forms in my mind before I respond. Usually by then I’ve correctly identified the topic and their intended meaning. If I take too long to do that, I comment on one aspect I’m sure I understand, to encourage them to say more, to give me more time to figure out what they’re talking about.

When I’m tired, I also struggle because I interpret things literally. I suspect that any other time I remember what I know about that person, or topic and do mental gymnastics to get from what they literally said to what they actually mean. That gets socially awkward because neurotypical people, especially adults in a professional context, tend to want immediate answers to their questions. But they don’t say what they literally mean, so I need processing time to do mental gymnastics before I can answer.

Hyper Focus

This can make social interactions difficult. For example, when I’m planning what I’m teaching next week I plan teacher groups on four days of writing, despite thirty minutes earlier discussing having only three Writing lessons that week. Because if I am planning Writing, my brain is NOT thinking about the timetable, it is thinking about WRITING (this is the case for almost every complex thing I’m thinking about, almost always).

Often in meetings I’m hyper focused on one main thing, and someone asks or talks about something else. There’s a mental distance between me and them. To cross it, I have to pull back from that one thing I was thinking about. I need at least two, if not three details to figure out where on Earth my colleague is standing, let alone how to cross the mental gulf between us to talk about the same thing. And piecing together those clues takes time, so again I need more processing time in face to face, or on the phone conversations, when adults expect an immediate response. (This is why I love emails and social media, because I can take all the processing time I want before responding.)

[2024 edit: hyper focus is how I countered extremely high, persistent levels of distractibility, stemming from lack of dopamine in my brain due to ADHD meaning my brain doesn’t filter out anywhere near as much information as it should. Hence focusing on a single thing and not four others all in that moment also competing for my attention took A LOT of energy].

Group Conversations

Picture this. You’re in a meeting in which other people frequently give very few contextual clues, and elaborate on each other’s thoughts or change the topic rapidly. You don’t have enough contextual information to pull back from your hyper-focus to get what Joe is saying, and now Jane is saying something else, and then Max changes the topic again. Its like everyone else is is cycling on a level surface as a group, and you’re in the skate park stuck on jumps. You’re hitting road blocks, and doing all sorts of crazy gymnastics to move in a straight line and wondering why its so hard to keep up with the group cycling/ conversation. This is me in staff meetings.

[2024 edit: the above is a classic ADHD struggle.]

What are Social Graces?

I’ve never been a fan of a few basic social conventions.

1. I don’t use names.

I’m a teacher. I know that people like being addressed by name. That a simple thing like that can fill people’s buckets. But in a state of nature I would never speak to anyone by name unless they had their back to me. I’m just not wired that way. I’ve had to learn to use my students and colleagues names often and it’s something I often have to do consciously and deliberately, where everyone else seems to do it naturally.

So how do I speak to people? As a sociable person who likes people, I just walk up to them and start talking about whatever I notice that relates to them/ us/ the setting at the time. I often catch people off guard, and they take a moment to process what I’m saying, and introverts struggle. But I’ve started some great conversations that way.

2. I don’t like eye contact.

This is a classic, obvious autistic trait but I was unconcious of it for quite some time. Because people look you in the eyes and insist you look back from childhood. So you make yourself do it and pretend it doesn’t bother you. Or you make eye contact so they know you’re listening but you keep finding excuses to look away. They don’t notice anything. And you don’t want to notice how uncomfortable eye contact makes you, because God knows how often how many people are trying to make eye contact with you and you’re trying to uncomfortably meet it!

3. I don’t do small talk.

When you talk to people you’re supposed to ask how they are. When they’re strangers you’re supposed to do ice breakers, or ‘polite conversation starters’ like the weather, or —hell, I don’t know because I don’t do it. Why? Because I’m not interested. I’m interested in what I’m interested in, so in a state of nature I’m just going to launch into that with no names, greetings, preamble or niceties —no time wasting— lets get into it! (Yes the impatience is likely ADHD which I have quite a few traits of, and not just the ones that overlap with autism.)

Again, I have had to spend lots of time learning and practicing asking how people are, or thinking of things that matter to them and asking how those things are going. I do care about the latter. If they start talking about it I will show interest in my responses. But its not natural for me to think what to ask about other people. I used to just assume that if something mattered to people they wouldn’t need an invitation to talk about it and would just say it, but I’m learning there are many exceptions to that.

Elise Carlson selfie, smiling, wearing glasses, a cap, with short curls poking out the sides, stripy top, river and mossy rocks in background. — Neurodiverse me, hiking in the Otway Ranges, March 2023.

Brain Functioning

Organisation

Time Management High School

I had no idea what the above words meant as a kid or teenager. I lived a five-minute walk from the back gate of my school. I walked to school and was often a few minutes late. Why? Because to get to class on time I had to know how long it took me to get ready for school, how long the walk was, factor in the time to get from the gate to my locker, to carry my books from my locker to my classroom. I had to juggle four things I have no inclination to deal with it, at the same time.

[And what was the point of being on time to class? Lining up outside the room? Waiting for everyone to slowly take their seats? If I came in right as the teacher was starting the roll —no time was wasted. I’ve always known I was a why person. If you asked me to do something I saw no reason for doing and gave me no reason —I wouldn’t do it. (More on this later.)]

Time Management University

At University I quickly realised I was not going to keep track of which assignments were due when, or even remember the assignments I had to do. And I’ve always found dates meaningless. There’s just days of the week, and which week it is of the school term or holidays (which works well for me as a teacher).

So how did I manage time around classes, a casual job and getting all the assignments done? I learned early on that starting an assignment within a week of getting it, working on it as often as I was motivated to, then doing the next got things done on time. So my ‘time management’ was just ‘start early and hope it works’. (Even now, this and ‘work on it as often as possible’ and maybe ‘achieve big thing x this week and thing y the next week is the limit of my ‘scheduling.’)

Navigating to New Places

I sucked at this, for over a decade after getting my licence. Navigating to an unfamiliar place meant looking it up in the Melways (a print book as this was pre sat nav and pre Google Maps), calculate travel time, factor in time to find a car park and time to walk from my car to the unfamiliar place. I got lost A LOT the year I got my licence. As an adventurous, easy-going person, I learned to embrace and enjoy it. If you drove too far out of town, the green signs would tell you where the next town/ suburb was and I trusted those signs and didn’t worry too much.

But when I had to be at that unfamiliar place at a certain time? That remained a challenge because I found it REALLY hard to factor all four of those things to get there on time for… about fifteen years. Not because I’m stupid. Not because I’m too lazy to plan. But because the night before when I set my alarm clock, or when I decide my departure time, I forget time to find a carpark, or get from my car to the unfamiliar place or that peak hour traffic is a thing (to this day that one catches me out).

I’m Thinking…

Hyper Focus

This has advantages too. As a teen, my mum and brother could be arguing in the next room, and I wouldn’t really hear them because I was hyper-focused on writing or editing my latest novel. But it wasn’t the greatest for my health as a teenager. In hindsight, I didn’t dress warmly enough in winter. I’d hyper-focus on the fun stuff I was doing with friends and not notice how cold I was. That wasn’t good for my asthma or hey fever.

Or I’d hyper focus on writing on school holidays, then realise it was four o’clock in the afternoon and I hadn’t eaten lunch yet. I still have to be careful when I’m working on anything important to me —at work or books at home— to keep an eye on the time, and not go too long without meal or bathroom breaks or get too hot or too cold (or write/edit novels until 2am when not teaching). Its a constant thing.

What’s the Point?

As I said earlier, why be on time for class, so I can line up outside, wait for everyone else to enter and sit down slowly and get zero benefits for having got out of bed a bit earlier? If you want me to do something —tell me why. The fact you want me to do it doesn’t motivate me. The fact you were my parent or teacher and even now, the fact alone that its my boss asking doesn’t motivate me. Intrinsic motivation for me is not conforming to other people’s expectations, their wants, being obedient or doing anything purely because someone asked. I care about, I want to understand, I am motivated by WHY. Tell me how it benefits people —students, colleagues, my boss, me —anybody— or how it makes my work more productive, or easier, or safer or whatever. That’s what motivates me. I don’t know anyone else so strongly motivated by being told why.

Who Cares What People Think?

I concluded as a teenager that collectively: people are stupid. Everyone else’s main motivator at high school seemed to be ‘does this help me fit in’? or ‘is it cool’? And what makes something cool? Cool kids think it’s cool. And what makes them cool? They just are. Does that make any rational sense whatsoever? No. So did I have any respect for their opinions about anything? No.

I suspect the weight I’ve given to rational arguments over everything else since about the age of seven, and especially throughout my teens, the black and white way I tend to see people and complex situations is another neurodiverse trait I have. Yes, I like people and I’ve always desired friends. But I want friends on my terms. I want to be me. I don’t want to conform to other people’s expectations of me. They expect me to a binary female. They expect me to be hetro sexual. They expect me to be neurotypical. I am none of those things. So I’ve always been disinterested in anyone who doesn’t like me for me and created my own space to be me. Since I was 15, my attitude was “I am me and if you don’t like it you can get stuffed.”

I’m Excited! Are You Excited?

There are many reasons I love teaching primary school children. Mainly, because so many things are new and exciting to them. They’re excited to be alive, and so am I. They see new amazing things and cry ‘Wow!’ They don’t care if they draw attention to themselves. They don’t care if people judge them for their enthusiasm. I don’t either.

I remember sitting in a tutorial in my first year of university and being astounded at how un-animated my classmates were. They sat so still. They looked so out of it. I put my hand up to give a wrong answer on purpose because no one else would answer the question. I wanted to knock on their skulls and call, ‘Hello? Is anybody home? Or am I taking this class with a bunch of zombies?’

There’s always been a large disconnect between my excitability and the majority of the adult population. When I meet new people, or familiar people, when I’m outside experiencing nature or exploring new places —I’m energised. I’m excited. I’m animatedly loving and living life to the full. I’m surprised that everyone is smiling at me. Then I realise I’m doing that thing where I walk around with a big smile on my face and am oblivious to doing so. This another of my traits I don’t have in common with any adults I know.

Does my brain have an off button?

I have two speeds: fast and stationary. I’m functioning at 100 miles an hour, or I’m asleep. There are rarely inbetween modes. This is because my brain DOES NOT STOP. No matter how tired I am, I am almost always thinking something, often something complicated and deep (this nearly killed me when I had long covid. My body was FUCKED and I still couldn’t rest properly for weeks).

The only things that keep me present in my physical surroundings are hyper-focusing on the scenery around me and or the inner symphony playing in my head (I often have instrumental music playing in my head, usually matching my mood, especially when I’m really happy).

As a teenager I’d sometimes stay up writing novels till midnight, when my exhausted body would insist on sleep. In my twenties I switched from power walking to running five days a week, to make my body so tired that it would drag my brain to sleep at night. (That was still crucial when I started teaching full time, which should have tired me sufficiently but didn’t). In my thirties I tire more easily, but still need to run 4km most days a week to sleep when fit (as opposed to the 6-7km I was running in my twenties). Regular exercise makes a HUGE difference in how well I mentally switch off and how deeply and effectively I sleep at night.

Stopping and Resting to Get Well

Self-care has perhaps been my single greatest challenge as a teacher. I always underestimate how sick I am. Usually drastically (and with a weak chest and asthma I can get SICK in winter). I spent years being terrible at lying in bed or on the couch. I’d get bored so easily. I’d try to write novels when my brain wasn’t up to it. I’d read them when it was still tiring. I’d go out for walks when I was barely well enough to stand because I HATE sitting inside all day. (Yes, even when long covid fatigue made me feel I’d literally gained 20-30 kilos I’d still drag myself out to walk even when a three hour lie down was what I desperately needed).

I suspect ADHD levels of desire for sensory and mental stimulation make rest very challenging for me. That’s probably why if I’m on social media a lot —I’m sick. Posts are short, easy to read and write unless I’m in a comma. And they’re stimulating. So social media is how I talk my brain into taking it easy. Then I try to switch to tv shows, then reading, to properly relax my mind and body and let them rest so I can get well. Again, learning how to do this defies all my natural instincts and has taken YEARS. I really see ADHD all over this.

Why did you change that?

In a recent meeting at work, I was asked to do something in a different order, for which I couldn’t use my normal data, with no forewarning. I sat there going WHAT? How am I supposed to do that? We’re supposed to do the other thing first? And I won’t be able to use the thing that normally helps me. How on Earth am I supposed to do that?

There was a solution, and having had to develop all sorts of habits to make navigating a neurotypical world as a neurodivergent person easier my entire life, I quickly found it. But I’m not fond of things changing without notice. Last time I missed a flight, I had to take time to take it in. Just breathe. I can’t now do x, y, or z. Plans have changed. Then gradually, one step at a time I make a new plan of how to do things. Standing in the ticketing queue for two hours was a perfect opportunity to do this.

So heads up, if you know a neurodivergent person (especially someone who’s autistic): don’t spring sudden changes on them! Sudden change is stressful. It often needs to be processed faster than I’m capable of processing it. And if you’re the parents of an autistic child: always give them an idea of how long they can do that thing they love, that they must pack up in five minutes, in two minutes, now. Sudden change is bad!

What was I doing again?

It’s classic me that at this stage in the blog, if there was any logical connection between one subheading and another —I completely forget what it is. I knew I’d fully recovered from long covid the day I found myself working on the sixth, seventh, eighth and ninth jobs I wanted to do at home, having started, not finished and forgotten about jobs 1-5. I’m very easily distracted. The notion of beginning one thing and continuing it until its finished without starting at least three other things first is utterly foreign to me.

I normally have 70 tabs open on my computer, the maximum. If I don’t have every tab I use as an author and in my private life open at once, how will I possibly remember all the digital jobs I was doing? When I completely lose track, at least once I week, I open all tabs I don’t recognise. I find writing competitions, book promotions, the latest author platform to join etc.

I like open tabs for the same reason I write to do lists on physical sticky notes: because its right in front of me. I never understood the point of diaries. You write dates in them, shut them, and everything inside them ceases to exist. If I can’t see it, I forget its there. So I keep my To Do List on a single page, and in some cases literally put physical tasks where I will fall over them so I don’t forget them.

ADHD?

My high levels of energy, inability to switch off, tendency to prefer doing umpteen things at once, to forget anything I can’t see, to fail to focus well enough to manage time or navigate to new places all point to ADHD for me. My doctor thinks so too. I’ve bumbled along, noticing things I find it easier to do differently to everyone else, accepting things I suck at that they find easy, and just doing what works for me. Or making it work for me, like exercising regularly to sleep well at night.

I’m relearning to manage it all, long covid having suppressed all my ADHD tendencies completely for seven months. So my next blog on this topic will be strategies I’ve developed to help manage being neurodivergent.

March 2024 Diagnosis Update

My ADHD has just been diagnosed. I think it was in the area of focus that a medical professional told me I needed to score six for ADHD on one of the tests. He also said, ‘Congratulations, you scored nine.’ I was totally unsurprised and content with this.

ADHD has always been more obvious in how my neurodivergent self presents. But on reflection, I’ve listed quite a few autistic traits above. And there is some overlap between autism and ADHD, and my mother is AuDHD. This is likely not the end of exploring my neurodivergent-ness, but only a stage in the journey.

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Living With Long Covid -My Experience

November 4, 2022 / Elise Carlson / 0 Comments

I’ll preface this blog by saying I’m one of the lucky ones. I kept working. Full time, while living with long covid. And I am, (over one year+), still getting better. Many aren’t so fortunate. Yet the difference between my long covid experience and many people I know who got covid but not long covid is huge. In short, they got sick for a few days or a week and maybe skipped gym for a fortnight. I spent eight days in bed, then aged around thirty years (for six or so months). So how did long covid change my body, mind and life?

It Was Hard to Tell At First

Four days before I tested positive to covid, I’d been recovering from a chest infection. Both illnesses put me in bed for eight days, but it was easier to breathe with covid. And the splitting headache and scratchy throat faded in just three days. It didn’t seem as bad as the chest infection. Lying in bed, I was capable of reading books and didn’t feel too bad. Then I tried getting up and was completely out of breath having walked around ten steps to the kitchen to get food. I remember leaning on the bench to catch my breath and not being able to consider why I was in the kitchen until I’d caught it.

Showering was tiring, especially drying myself, which also left me breathless. Finding the energy to climb out of bed and walk a few steps to the armchair at the end of my bed and sit up while eating dinner (with my feet up) felt like an achievement. My body ached and felt as heavy as lead. I concluded that I only felt ‘fine’ while sitting still and spent eight days lying or sitting still as much as possible.

Disclaimer: I don’t remember the first three weeks after testing positive very well. My brain fog was so bad, my lucidity so absent that I wandered about in a disorientated daze, acting out of habit and instinct, not consciously, nor properly thinking about almost anything.

I’ve Aged Thirty Years

But I have a job and need an income. And I’d never experienced anything that took such a physical toll on my less than forty-year-old body before. A chest infection in 2019 took around three months to fully recover from, but I didn’t realise covid had hit me harder until I returned to work. The short walk from my car to my classroom had me puffing like a steam strain. Manually opening four blinds in the classroom had the same effect, with loud groaning from the physical strain of opening each blind. Sitting in my teacher chair as much as possible, and minimising time on my feet was clearly key to making it through the work day and the work week.

I teach small groups of children sitting on the floor. So every time I got up was around a thirty or forty second procedure of careful leg positioning, using my hands to support myself and load groaning. Getting up off the floor was hard. I’d aged. Still, I taught Reading and Writing. Then it was lunch time. And I was so tired I was ready to go home and sleep. But there was still three hours of teaching left. And a one-hour staff meeting after that.

By Thursday, I had to cut explicit teaching short in the third or forth hour of teaching, because my brain suddenly melted out of my ears. I was modelling short division. Its a multi step process, but suddenly I didn’t know which step I was on. Or the step I’d just modelled. Or the step that came next. My brain just shut down and I didn’t know what I was doing. This remained the case for the forth hour of teaching onwards on a Thursday, and Friday for several weeks.

My body wasn’t what it was. My mind wasn’t what it was. I felt like I’d suddenly aged thirty years mentally and physically.

My Long Covid Body (weeks 1-3)

During that first week back at school, I slowly realised that my body was remaining heavy. My movements were always slow, and awkward and my limbs just didn’t move properly. Explicit teaching and anything that required any physical strain at all, like getting up after sitting on the floor, unstacking the dishwasher or walking twenty steps continued to make me very short of breath. By 4pm my body would start to shut down. If there wasn’t a staff meeting, I’d leave my classroom messy, not look at what materials tomorrow’s learning required, drop everything and go home to bed.

By the end of my second week back at work I was managing to start some of the paperwork I had to get done after teaching hours. On days there was no after-school meeting. My body was still shutting down by 5pm and I was still spending each night lying in bed for a few hours, before dragging myself out of bed for a shower and dinner around 8pm-9pm.

My third week back at work I somehow worked till 6pm for two nights to finish that after hour’s paperwork. And went straight to bed every other night. I was very proud of myself for getting the paperwork done, and in hindsight not properly conscious of my poor physical state.

Long Covid Brain Fog (weeks 1-3)

I mentioned above that my physical movements were awkward and clumsy. My brain was mentally the same. I was delighted to discover that as an experienced teacher, I had an autopilot for not just the dozen or so most common things we do on a daily basis in teaching, but more like the thirty most common things. I could run my classroom moderately well on auto-pilot. Thank God for that! Because my brain fog was so severe that if I had to run that classroom fully conscious of every decision I made as a teacher every moment of every lesson: I wouldn’t have made it through the first hour of my teaching day, let alone the next four.

Things I was not mentally capable of included: problem-solving, critical thinking, decision-making (unless I could default to prior experience via mental autopilot), focusing on more than one thing at a time, and thinking beyond that one thing I was doing. Mentally, I was barely fit to teach. But the thing I struggled more with is that I simply couldn’t write. Making sense in social media messages and posts was the limit of my writing ability. Forget blogs like this one, forget author newsletters or short stories. As for my second novel, for which I’d sat on feedback from critical readers and been waiting for work to calm down for three months so I could edit it? Now way Hose! Fiction writing was cancelled until further notice.

Staying Positive

I’m very glad I had that severe chest infection back in 2019. I’d done the whole, ‘But I’ve been sick for a week, why am I not getting any better? When will I get better? What if I never fully recover?’ thing back then. I knew that my chest was weak, and if a chest infection could set my body back for three months: covid would knock me out for at least that long. So I celebrated my body aches ceasing. I celebrated being out of my isolating sick bed, out of bedroom confinement, being able to talk to housemates and my students face to face and enjoying social company again.

Oh, My Body is Still Fucked

By the end of my second week back at work I’d gone an entire month without exercise. As someone who normally runs 4km four nights a week, and prefers two to three-hour long walks on weekends: that was an eternity. Spring weather was improving, and there are some lovely sunny tracks in nearby mountains that I was only halfway through exploring. I’d managed to drag myself up the stairs to the summit at the end of my eight days in bed with covid, so surely I was ready to go for a decent length weekend walk again? NO. I. Was. Not.

I had to take the start of the walk slowly because the uphill slope was hard work. But my legs were craving every step. My respiratory system craved being pushed to work even a third as hard as my pulmonary system seemed to have to work just keeping me on my feet. And by the time I’d reached a high point in the mountains, overlooking gum trees and boulders and paddocks below and beyond, I felt great! Exercise is SO important for my mental and emotional wellbeing. Its something I have always found incredibly freeing, and being physically fit and strong has always helped me to feel empowered and capable as a person.

That’s why I was able to walk far enough that I had stabbing pains in my left shoulder. Pain perhaps akin to heart attack pain. I slowed right down. I dawdled for forty-five minutes longer than I should have walked at all, because I had to get back to my car. Monday at work was ok. Tuesday was meetings all day. By Wednesday my lower back was inflamed and sensitive to the touch. Standing was painful and uncomfortable. Sitting was worse. I couldn’t lie down without taking painkillers.

Elise's feet and legs as they lie down in green, grassy lawns before a row of gum trees at a local park. High rise appartments in background, bright sunny sky. — A really flattering selfie ? of the first time I managed the 15min walk to a favourite local park of mine. Naturally, the first thing I did having made it was lie down. I had to sit and rest several times during that walk.

Physical or Mental Health?

By Friday of my third week back at school I was off work, in bed and on prescription painkillers (I saw my doctor a few times around then). It took three days in bed for the inflammation to go down and to downgrade from prescription to non-prescription pain killers. I was taking those non-prescription painkillers for a week and a half. It seemed that the physical exercise I longed for and craved was more than my covid weakened heart and body was capable of. But I was now at a critical juncture.

I mentioned above that physical exercise is freeing, and being physically capable helps me feel capable and contended full stop. It’s what regulates my usually highly energetic body and helps me sleep at night. If I was going to recover from covid, get back into a normal sleep cycle and rest properly, I HAD to get back into exercise. My physical health needs were at war with my physical health needs.

And that wasn’t the only battle. By this stage I’d been sick for four weeks. I’m a very resilient person. I’m also quick to smile, quick to laugh, likely to see beauty in things and normally an excitable and enthusiastic person whose mind operates at an average speed of a hundred miles an hour. When I’m sick, I’m none of those things. My mind was slow, dull and at partial, extremely limited operation. And I felt FLAT. So emotionally flat. I wasn’t sad or depressed. But smiling and laughing took so much energy. I just didn’t have the energy to be emotional —good or bad. Happiness was beyond me —until I got my energy back.

Past Experience Helped

I’d been there before. During that 2019 chest infection (in New Zealand, where no friends or family could visit, cheer or help me in person) I’d realised that the only thing standing between me and depression was exercise and my beloved great outdoors. I’d dragged myself out of bed for a half hour walk through a reserve of beautiful ferns and tropical rainforest, through which bright sunlight beamed and beside which a creek flowed. For those precious, hard earned, fleeting moments each day I was happy. Exercise and the great outdoors gave me a reason to wake up each morning (or to wake up and not cry because I had another day of being severely ill and alone to endure.)

So with Long Covid, the solution was obvious: push my body. Find out exactly how much exercise I could do without giving myself a heart attack, how often and do it!

The Physical Battle (weeks 3-7)

It may not surprise you that by week four of long covid I was not ready for physical exercise. In hindsight, I wasn’t really ready for a 20 minute walk two or three times a week (on work nights). I was gasping for air and hit by chest pains after 500m. I was also physically tired and walking hunched, being overtaken by an old guy who was hooked up to oxygen tubes -I shit you not! That’s when I conceded that ‘exercise’ was too lofty an ambition. That all I could aspire to was getting out of bloody buildings, for a breath of fresh air and a moment to feel the breeze on my face and assure myself that the in-accesible world of the outdoors still existed and would wait until however long it took for me to inhabit it again.

So I did a painfully short, 750m walk down the round, round the field then back home three times in week four. My chest and back pain gradually receded. The next week (week 5) I extended my walk to 1.6km and a little garden beyond the field. That went well for two days, so I went further along the track near the garden, walking slowly 2.6km. Then temptation struck again, and on Sunday I walked the full 4km loop to cross a river I hadn’t reached on foot for two months. I felt fantastic! This was actual physical exercise! And it was clearing my brain fog, and energising me! For an hour or two afterwards, I actually felt like myself again!

I Got Carried Away

I did the 4km river loop twice more that week, after work. Naturally, I got chest pains and had to take painkillers and not walk at all for the last two work days of week six. Ok, ok, fine then body! I’ll limit myself to half an hour’s exercise three work nights a week and only one longer walk on the weekend! (A concession that in hindsight was still too much.)

But how to remove the temptation of walking too far? I turned to a short loop with no longer options, a mostly flat route, without the stairs that had given me grief in the mountains. And for three weeks I only walked locally, only short distances. And conceded that up to four weeks after having covid was too soon to realistically expect to return to exercise and that the best I could do now was stretch my legs, get fresh air and enjoy the sun and wind of my face and watch the birds chitter and dart through the bushes as I walked past.

The Turning Point (week 8)

From weeks three to six, it was hard to tell if I was getting physically or mentally better, or if some symptoms subsided while exercise attempts flared others. And work got busy or I got tired at times and missed one of my half-hour walks, so it was hard to gauge if I was getting physically fitter or stronger. Until school holidays. I spent around three days lying in bed. Then for the next week, week 8 since I’d returned to work, I’d go for a 1-2 hr walk in the evening, after spending the day lying on the couch.

Those long walks and resting before and after them were the turning point. After the first two-hour walk my head was clear and I felt energised for the next four hours. I upgraded from social media posts to writing newsletters, editing blogs and by the Wednesday: writing a full chapter-length bonus scene for my debut YA Fantasy novel.

By Wednesday, the brain fog and fatigue didn’t return the day after I exercised. It seemed that going for a second walk within twenty four hours of the first kept both at bay. I would get tired. And I still had to sit comfortably resting for much of the day, but my body and brain ceased reaching a point where they shut down and I had to go straight to bed each evening. I began fiddling about on social media and authorly jobs until 10pm (as opposed to 7pm in recent work weeks).

I was Back!

The proof came when on the Friday, after three months of being too sick to be mentally capable, I returned to editing my second YA Fantasy book. During week nine since having covid, I smashed through eleven chapters of edits. By Friday of week nine (mid October), I went for my first run since June. Like my first mountain walk after having covid, it was probably fuelled almost entirely by restless energy, exercise cravings and a massive endorphin hit. My second attempt to run the same 4km loop around the river in week 12 saw me jogging slower than walking for the last half, and my blood sugar so low I had desperate sugar cravings and was jittery and giddy by the time I got home.

The Way Forwards (3.5 months after catching covid)

I’m still not the 36 year-old I was before having covid. Interestingly, with my returned mental energy and the return of my ADHD tendencies, I’m more distractible and require higher levels of stimulation than I used to. Week 11 was my second back at work this term. I had to be careful not to mentally wander from meetings, and have accepted that 2-4km walks three times a week after work and a 1-2 hour walk on the weekend is the most exercise I can do, after the rigours of a work day/ week. Running is off the cards after work until January (summer holidays [or so I thought back in Sept 2022. Over a year since I got covid I still can’t run -Aug 2023].

While my brain fog appears completely annihilated by week 8’s exercise [it wasn’t. It came back mid-term], I can still get physically and mentally tired and require more rest from the same workload than before I got covid. I often wake with an aching chest on a Saturday morning, after a busy week, especially if I sleep poorly. Perhaps every second Saturday I mainly lie in bed doing nothing in anyway mentally taxing, to let my body and brain recover from a busy working week. And while a busy term four often requires me to work on student reports till 6-7pm (having started work at 8am), I’m tending to lie in bed after that (and after my walk ?).

But I’ve been working till 7pm at times with only tiredness, not mental or physical shut downs or strong fatigue determining my work hours. 76 year-old me has pissed off to the future where it belongs, and I’m back to 36 year old me, with twenty something-year-old mental energy, still fighting for my full exercise, strength and physical capacity. (I hope to be running 4km four nights a week again in January, six months after I got covid. Hopefully carrying the shopping for a 5min walk home will no longer require a lie down to rest and recover either).

*Week 15 Since Testing Positive Addendum

Chronic pain has been back all week. The only potential ‘over doing it’ thing I did was a one hour shopping trip on a Friday night, meaning one hour less rest after a busy working week. I’m not even sure that’s why I’ve just woken from 13 hours sleep on a Thursday night, and am off work today having worked only two days this week. Clearly my covid recovery is not linear, and will have ups and downs and periods where my body demands extra rest just to function normally again. My hard fought for fitness remains, but it seems that those later work hours are more than my body can keep up with and that pacing myself at work remains crucial.

One Year on: 2023 Addendum

The above was the beginning of another big chronic pain, fatigue and brain fog slump that would last from October 2022 right through to mid January 2023. Only a five week summer holidays and a gradual return to walking to rebuild my fitness brought a permanent end to my brain fog. I had another chronic pain and fatigue relapse for three weeks in March, then two months of pain after a chest infection that put me in bed for three weeks beginning in July. My doctor has warned that I may have fibromyalgia as a result of long covid (a chronic pain illness for which there is no cure), or an autoimmune disease as a result of long covid (again, no cure.)

I’m on my third doctor since I got covid, having ditched the first two when they tried to tell me my chronic pain was depression (and ignored all my other symptoms and the fact covid kicked them all off). By the time I had a decent doctor I was already taking vitamin supplements my mother’s doctor had suggested for covid, and found epsom salt baths and magnesium supplements helped ease my chronic pain. My new doctor tested and found I had low iron and B12 in December 2022, and that helped my Dec-January pain and fatigue recovery. I’m still taking all of the above supplements.

Its been a year, and I still can’t run. Every illness and extended period of rest sets back my fitness, meanwhile the kind of exertion needed to rebuild my runner body’s muscle tone seems beyond my heart’s capacity. I get too short of breath/ weak/ chest pain and have to take walking easy, while jogging even slowly feels too strained. I still get short of breath carrying the shopping too. But its only pain and shortness of breath relapses I have now, temporary lethargy or tiredness replacing the fatigue (most recently only after I got sick with a head cold virus then chest infection).

One Year & 1-2 Months On

Pacing remains important to me. Not too much work a day, or across the week. Resting on weekends, and if its a bad pain day, week nights. My strategy with managing student reports and time consuming after hours jobs as a teacher is becoming get as far ahead as I can and stay ahead. Assume I can’t work more than 8am-5pm (ideally I’ll work till 7pm weeknights for 3 weeks to get students reports finished on time), and just do a little bit of the big jobs, weeks ahead, each week night.

Pacing is also likely to be crucial if I return to running. I felt great in September and managed to run at least 3 days a week for 3 weeks (walking the other days as my stamina drastically decreased from 1 run to the next). During the third run I had a flare of nerve pain in my upper back that lasted 3 weeks (only the nerve prescription from my doctor and extended rest the first week of school holidays ended it.) So if I’m to return to running, it might be 30 mins, 3 days a week, as opposed to 1hr 4 nights a week. And possibly run week and just power walk the next.

I figured out the above from my pattern of chronic pain and fatigue, which normally hits around week 7-8 of term. My pain, later accompanied by fatigue, seem to be triggered by my stamina falling to the floor during and since Long Covid. My doctor is now very close to confirming that I now have fibromalgia (a chronic pain illness) as a result of Long Covid. The ‘treatment’? Pain killers (one terrible night’s sleep can see pain outstrip them, as this week is proving), and… pacing myself. Life now is definitely about determining how much I can physically manage and how much rest my body can’t function without.

Thankfully though, my brain has been fully itself (ADHD and all ????) since January. Having a clear head makes it a lot easier to manage a body that tends towards greatly reduced physical capacity, giving it the rest it demands to function.

I’m still somehow teaching full time (have been since I got covid, though I got wise when I got sick in June and took 2 weeks sick leave, then had 2 weeks holidays and by second week of the next term was doing well). I love teaching and my kids. But if my health remains in this state, I can see it forcing me to cut back to part time work by the time I hit 50, and then into early retirement (55?). Teaching young kids is too physically demanding for a body in my state of health to manage as it ages.

A Final Note

A final note: I still teach and shop wearing a mask. I feel uncomfortable being in the same room as more than one other person if I’m unmasked. The prospect of having to go through all of this again (let alone having a worse second experience of covid) is unthinkable. My mental health is better off not thinking about it, masking up (N95!) and avoiding crowds as much as possible.

Thanks for sharing my covid journey with me! I hope your covid experience(s) is MUCH milder and you recover far more swiftly (and completely) than I did!

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Listen to & UpLift Trans Voices

The Listening Bit

The Uplifting Bit

Support Trans Creatives

Trans Rights

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Political Support; Sign Petitions

Tell People in Power to Protect Trans Rights

Don’t Be a Bystander

Tell Transphobes Their Transphobia is NOT ok

Other Ideas

Reducing Sensory Overload At Home

Clutter is Evil

Mess is Also Bad

Non-Overstimulating Household Set Up

Non-Overstimulating Pantry

Non-Overstimulating Crockery/ Glassware etc

Non-Overstimulating Storage

White Space/ Resting Your Eyes

Increase White Space, Maximise Cupboards

Reducing Visual Overload At Work: School

Walls Covered in Posters/ Charts are Evil

What are Visually Overwhelming Walls Doing to ND Adults/ Kids?

Noise At Work

Related Reading

Minimising Anxiety: Foreknowledge

Company & ADHD Support To Arrive

Company & Preventing Accidents (due to sensory overload)

Comfort & Sensory Needs

Stand/ Sit Near A Wall

Company, Sensory Overload & Autism Support

Anxiety/ Regulation Aids

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Final Note

Further Reading

Disability Community

Disability Community- Get One

A Good Doctor

My Doctor Wasn’t Good

He Had to Go

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How I Found the Right Doctor

Yep, got the one!

Patient Awareness

Medical Malpractice that Could Have Impacted Me

Safeguarding Yourself/ Family

Trust Yourself and Listen to Those You Trust

Further Reading

My Asexuality as a Teen (circa the early 2000’s)

My Asexuality in a (Baptist) Church

My Asexuality at High School

Lack of Sexual & Romantic Feeling

So Dating?

Asexuality at University

Asexuality & Alienation From Allosexuals

Asexuality as an Adult

Have You Tried Online Dating?

I Don’t Reciprocate (Romantically or Sexually)

Single Life

What’s Next On my Bucket List?

How My Asexual, Aromantic Life Looks Now

Further Reading

Challenges -Distraction & Focus

Related Challenge: Keeping Track

Challenges -Noticing and Meeting Basic Physical Needs

Challenges: Urgency and Never Stopping

Challenges: ADHD Brain Jam

Diagnosis, Medication & Clarity

Medication: The Journey

Day One: Dosage 10mgs, Notable Difference

Day Two: Dosage 20mgs, Again, Good Differences

Day Three: Dosage 20mgs; Inconclusive —External Factors

Day Four: Dosage 30mgs: Meh!

Day Five: Dosage 40mgs: I’m Me AND Focused!

Day Six: Dosage 50mg ???

Day Seven: Dosage 60mg; Brain Jam Unlock

Day Eight: Dosage 50mg; Not So Good

Day Nine: Dosage None

Day Ten & 11: Dosage 50mgs -Not Right

Day 12: Dosage 40mgs -Might Be Good?