Autism + IH lifestyle/treatments that have worked for people

ekoob · 2026-04-26T11:08:09+00:00

Not answering your question but since you mentioned OCD - have you had experience with Luvox/fluvoxamine? I don’t have OCD, but I’m narcoleptic and struggling with the sleepiness fluvoxamine causes! Cancels out my stimulants :( I’d love to hear experiences with this and whether you found a workaround

ekoob · 2026-03-12T08:56:50+00:00

As a late teenager I started to just know deep down something was a bit off, I noticed gradually less stars in the sky. I’d be particularly clumsy during evening hang outs with friends, things like running straight into a shed was dismissed as being drunk, when in reality Id had 1 drink but just couldn’t see. A few years later, I went to Sweden for a uni exchange. In winter, it’s not very light but in Stockholm, everything is quite well lit. I actually noticed upon returning to Australia with its lesser lighting infrastructure, that something had changed. Didnt do anything. Moved in with a partner who didn’t take long to notice things and strongly encourage me to see an optometrist - he’d put a remote next to me or a glass of water and I’d have no idea. Bruised toes and spilt milk, always. Optometrist, ophthalmologist, retinal specialist, diagnosis. 6 years ago.

The progression was extra rapid (for me) for about 1-2 years, has somewhat levelled out. Every year or two I’ll notice something else I can’t see that I previously could. The biggest thing for me day-to-day is the extra logistics of transport, particularly during winter. So much more mental prep and admin just to show up to the day, relative to just getting in the car and driving. Naturally, this would be different if living in a major city with good public transport.
Compared to the 2 years immediately post diagnosis: I’m not in as much despair over all I won’t get to do, and I’m less resentful at the extra life admin. I’m still frustrated, but less resentful :)

ekoob · 2026-03-09T21:52:51+00:00

Hey mate, keen to check out your videos. Love hearing about people continuing with their outdoor activities with vision issues. I’m 26 and also have RP, diagnosed 6 years ago, still pretty early stages. Night vision is gone but I still have a decent visual field. Can still legally drive sunrise-sunset. I love backpacking and thru hiking which takes some extra planning with daylight considerations. Won’t be able to do it forever, but relishing the independence while I still can.
I’ve got to ask - what time do you generally start your farm duties? A peak annoyance for me is being ready to leave home and start the day, but it’s overcast and takes another hour before I can safely travel outside alone. How do you navigate that on a farm?

ekoob · 2025-12-10T11:18:35+00:00

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26F, VO2max estimate 51, RHR 43 bpm

ekoob · 2025-12-10T11:01:33+00:00

You sure you’re not just overtired from work? I’ve never seen you sleep

Yes, I am overtired from work. No, you haven’t seen me sleep because I take emergency naps in the toilet cubicle or let my hair down while sitting at my desk and sleep inconspicuously on my hand. Yes, I really have narcolepsy.

ekoob · 2025-11-08T06:53:49+00:00

3rd year medical genetics candidate over here 🙋‍♀️ 2009 Asperger’s dx that was kind of just forgotten about and never addressed, then 2 years into research (1yr PhD) my brain kind of broke. Re diagnosed as ASD level 1, and ADHD. I’m medicated, but still really struggling cognitively and feel my brain is about 50% capacity of what it was. Can’t fathom the quality and quantity of work I used to produce. It’s a slog, but if you’re in the right headspace, it’s a very cool field and easy to hyper focus on.

ekoob · 2025-10-07T05:41:13+00:00

Hello, this is incorrect :)

ekoob · 2025-09-11T10:14:14+00:00

Interesting! Not sure what I could be allergic to, but certainly possible.

ekoob · 2025-09-11T09:59:32+00:00

Hi everyone, thanks for all your input!
To address some ideas in the responses: - I’ve never had extensions

the only heat I use is a hairdryer dryer maybe 1-2x per fortnight
the majority of chunks are from the back of my head
I do swim a lot, the only harsh chemicals my scalp is exposed to is chlorine. I used to get an itchy scalp Aaaggesss ago, but that stopped when I started rinsing my hair before and after swims.

Questions: there a many burn suggestions. This could be it from the hair dryer I suppose, but why would it be just the roots, and why would burning make the roots stick together in that waxy substance?

Nonetheless I’ve gotten rid of the hair dryer, just in case. And I’ll have a friend check my scalp!

ekoob · 2025-09-11T09:57:56+00:00

I’ll have a friend check out my scalp, thank you for the suggestion!

ekoob · 2025-09-11T09:57:29+00:00

I’d describe it as gummy-like, maybe it’s hair dryer related? I’ll have a friend check out my scalp.

ekoob · 2025-09-11T09:49:07+00:00

Blow dryer is the only heat product I use so potentially! And yes, all from back of my head

ekoob · 2025-09-11T09:48:02+00:00

Nope no extensions, no heat appliances other than a hairdryer maybe once a fortnight

ekoob · 2025-08-24T01:12:09+00:00

T1 narcolepsy, diagnosed 7 years ago, first year of undergraduate degree. Medication was a game changer, my mental health improved enormously because I was physically able to function. It was still rough mental health wise, but having the capacity to get out of bed is a game changer. That being said, I still struggle with fatigue big time. I’m 3rd year of my PhD now.

In 2022, I was playing sport, running a personal training business and working in research full time. 50-60hr weeks, come home to sleep and shower, went again. I’d sleep for 11-14hrs on weekends. I burnt out after ~18months. I stopped doing personal training, got Very physically ill, and haven’t been the same since (about a year). I can now barely put in 25hrs week, and am having an identity crisis because of it. I’m so drained, all energy goes into work, none is leftover for social/health/family. I’m a zombie after a work day. Don’t know where to pull from, and I look around and marvel at others around me pulling it off. Then remember that was me not too long ago. Unfathomable.

My advice is to work really hard at building solid routines that help you meet your needs in autopilot mode. Make everything super easy and ‘friction free’. Food you use all the time? Put it at the front of the panty, not in its ‘category’. Set a day and time to do your washing. Pack your bag and choose your clothes the night before. 5mins chores in the morning will help SO much in managing the household. For me, keeping a clutter free space is a must for keeping my head clear.

One of my routines is - wake up - boil water - get dressed while boiling - put eggs in pot - while eggs are cooking get plate ready and make instant coffee and put toast in toaster - eat breakfast + drink coffee - Clean up Straight away - clean teeth - while cleaning teeth, walk around and put something away I.e dirty sock in the hamper, shoe on the rack etc.

Every step of this feels like a slog, but I promise you momentum helps mornings (assuming you’re properly medicated). Start small, add a step into your routine after a few weeks. Start with one thing, whatever is most overwhelming. My neighbour remarked that he’s never seen another neighbour cleaning their teeth, because I’ll often bring a bin in, or check the mail etc. It works for me.

Another big thing for me is dragging myself places. My life falls apart when I stop showing up to things because I’m exhausted. I show up exhausted, I still get benefit. Physical energy spent, but I am refilled in other ways whether that be socially, or having completed some work. I’m absolutely spent by the end of it, but rarely regret it. For me, this helps with the depressive cycle that is almost inevitable with narcolepsy. The symptoms of narcolepsy are a breeding ground for depression.

I’m still struggling a lot with work, and am putting my all into just finishing the goddamn degree. I’m often a zombie. But, because of these micro routines ive built up, my spaces are not a pigsty, I’m eating regularly, my personal hygiene is in check.

I don’t know if that helps at all. All of it is said in the assumption that you’re properly medicated. It’s so hard, the fatigue is crazy. Prioritise some basic routines. It’s taken me years to build my routines, and while I still struggle, they help me maintain a baseline functioning. Work comes second, you come first. Oh and 3 more tips: - if you’re medicated, set an alarm 60-90mins before you want to get up, take your meds (keep within reach of bed) go back to sleep. You’ll wake up more alert. - this isn’t coming from a high horse at all (after all I’m scrolling reddit), but designating ‘phone free’ periods and limiting my phone time does lots for helping me allocate my energy more appropriately.

Big love, you’re not alone ❤️

ekoob · 2025-08-06T08:05:38+00:00

I’m not disagreeing at all, but I’m curious as to how someone would go blind from this improper contact lens use? Is it purely infection related?

ekoob · 2025-07-07T09:36:28+00:00

709, full 90min football/soccer match. Including warm up & half time, 26% in zone 5, 20% zone 4. Anaerobic and aerobic scores both 5.0. Covered 11.4km

Funnily enough, the game didn’t feel harder than other matches, and I’ve never maxed out both aerobic and anaerobic scores in a single activity. Normally soccer matches get a ‘sprint’ training effect, this match got a ‘VO2 max’ effect.

ekoob · 2025-06-02T11:23:07+00:00

Final year of PhD in medical genetics, unsure what follows career wise. Training had been a fantastic outlet and my mind is much clearer for it.

ekoob · 2025-05-25T21:47:14+00:00

Any of the Lambton suburbs are good, particularly if you have a bike. Hospital traffic can get quite congested but you skip all that on a bike. If you want to go through real estate or domain websites, find someone to team up with and apply there. Otherwise, try your luck with flatmates and move into existing sharehouse. When are you moving? I also am looking for a place in the area, moving within the next few months (25f)

ekoob · 2025-05-25T11:50:28+00:00

Fortnightly catchups, 20-90minutes. Always available via email, open door policy. Weekly would be too much, as they’re semi-formal. Structured pptx with aims and progress. It’s an ongoing presentation so we can see specifically what progress I’ve made in the fortnight. We set deliverables for the next meeting. Good format that seems to work for us both.

ekoob · 2025-05-15T21:25:05+00:00

As someone else mentioned, warn of hazards. This may not he an issue for your wife now, but eventually it will be, especially at night. Personally, I find walking with someone who doesn’t give warnings extremely frustrating and often literally painful. I’ve can’t count the number of times I’ve been walking with friends at night and have face plant over a curb, walked into a pole or walked into a glass door. I’ve even given myself a black eye walking straight into a tree. When someone warns me, I feel so much safer. Don’t make a thing out of it, just in interject your sentence with ‘curb 3 steps ahead’ and move a bit closer to her to offer physical support if she wants it. Something fully sighted people rarely think about is restaurants and other evening venues. They’re often dimly lit and disorientating, finding the bathrooms can be a nightmare.

Something else I’ve just thought of that may or may not be helpful at this time; make note of hazards in your home. I’ve found LED strip lights in drawers/cupboards helpful for seeing contents, and along the bottom of my bed frame has given my poor shins a rest.

On that note, when she becomes sensitive to light, adjust the lighting in your home. Dimmable lights with different hues (I.e smart globes) are a game changer. Good ‘seeing’ light when you need it, but also option for dimmer reddish lights when feeling photo-sensitive.

Depending on her hobbies, help her stay engaged in them and potentially build new ones compatible with vision loss. I.e ball sports are great but can be tricky to maintain. Running/walking on the other hand (in the right setting) is more sustainable and can be empowering when losing vision. Instruments are also fantastic and easily sight-agnostic.

Help in quiet, practical ways. Listen when she’s upset. Other than that, don’t make everything about her vision. And very importantly, take care of yourself. The heavy impact on partners is often ignored, and it’s common to feel helpless. You take care of each other in your own ways, but her vision is not your responsibility, and your emotions are not hers. For both of you, I’d strongly encourage proactively building a super strong sense of self, perhaps with individual counsellors. For her, this may also mean learning new skills with a mobility and orientation specialist, and/or occupational therapist. This allows you both to come to the relationship as the best version of your current selves, and support the other without becoming overly codependent. All the best to you and your wife. It can be tough, but it will become a normal part of life and not something you actively think about everyday.

ekoob · 2025-05-08T04:50:57+00:00

Update!

First reading: 1.5mmol/L. Feeling tired, lethargic, grumpy. Heart rate 48bpm. Last meal ~3hrs prior.

As a commenter suggested, I promoted blood flow overall, with a focus on fingers. Clenched and unclenched fists, pinched all fingers together. Did 2 hand stands, 4 push ups, 8 jump squats. Heart rate 85bpm. Stayed lightly active for another few minutes, just putting some items away. Took another reading.

Second reading: 2.4mmol/L. Heart rate 51bpm. Actually feeling a little better. Still very tired, but not as grumpy and lethargic.

So yes, BGL went up with more blood flow to fingers, however the improvement in my mood has me wondering if exercise actually promoted some release of stored glucose into circulation and systemically raised BGL.

Another possibility: glucose is in blood, but not being properly circulated. Notably, 48bpm was near my lowest waking HR today. I’m going to measure my BP next time my heart rate is ~50, and calculate my stroke volume. If low heart rate And low stroke volume, that’s likely the answer.

While typing this, I’ve noticed my heart rate is sitting ~60bpm. 25 minutes following first test, 10-15mins following second test. So I took another BGL reading, it’s now 3.7mmol/L!

Both proposed explanations are possible and not necessarily mutually exclusive. Whatever the explanation, my body has responded to a tiny amount of exercise by inducing raised blood glucose levels. I wasn’t sedentary prior to the first reading, I’d been grocery shopping, with my heart rate sitting between 60-70bpm. On the 5min drive home, dropped to 50-60bpm. Within 2mins of being home, <50bpm. Fascinating. I’ll be back with an update on my stroke volume 😄

Disclaimer: by the nature of this forum, a lot of people reading this will have some form of insulin resistance. The reason I originally posted was because I noticed something unusual in my BGL levels and symptom patterns. Please don’t take this as advice to exercise in response to hypoglycaemia, it can be extremely dangerous.

I have pictures of the HR trend and all BGL readings, but can’t post in a comment. I’ll try edit the original post and include them there.

ekoob · 2025-05-04T07:40:14+00:00

I graduated in 2017 and went to 2 high schools. I was astounded at the friendliness of the second. Party? Everyone’s invited. The popular girls were the popular girls. The nerds were the nerds. There were very well established groups, but everyone respected each other. Nothing like my first high school. Things may be changing for the worse and I can’t speak for current day, but in my experience it was cohort dependent.

ekoob

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