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I'll say I've noticed that there are places in my house that trap me into an energy drain stasis, so I try to avoid letting myself get into my rot spot unless I'm ok with doing absolutely nothing for the rest of the day.
Wow, that would be annoying. Currently I’m basically living in a studio, so would be difficult to avoid a specific spot in the home.
Cutting out my bad media habits worked for me (social media on my phone every minute of free time, and hours of Youtube in the evenings). Days feel longer, I've been reading a lot, finding time to exercise and finish projects (even during the work week). Also, my sleep has improved.
It does seem to help. I recently made a commitment to avoid digital media on my own.
I don’t think games or reddit or browsing is necessarily that bad in limited amounts. But it becomes too easy to start spending all your time on it because everything else feels too much effort and less fun.
I still allow myself any form of digital entertainment, but only when I do something together with friends. That way I still have some social contact, and I’ll have to do the effort to meet up if I want to do something fun.
When I’m by myself I’ll usually limit myself to reading, writing, going for walks, etc
Oh also, I snack a lot less and have lost weight. The initial reason I cut out media was in the evenings all I would do is snack and watch stuff until bed. And I NEVER actually felt ready for bed. Maybe I'd be tired, but there was some existential dread or something that I was wasting my life and not pursuing my interests.
Increase your working memory capacity by playing 60-minute sessions of working memory games on Lumosity.
Absolute best thing an autistic person can do for mental/social fatigue.
Welcome to being an adult!
Most people either figure it out or look for an easier job.
Wow, figure it out, what helpful advice for OP. What do you think they're trying to do by posting asking for advice?
Reduce your workload, if possible.
Instead of 38.5 hours/week, try to get down to 20-24 hrs/week, if possible.
I actually experimented with this in the past.
It does help quite a bit. ( but for some projects i would spend too much time catching up what i missed the other days)
The trouble is mostly finding part time work. When I tried it in the past, it was because I was already working full time and asked to have it reduced.
But now i don’t have a job, and finding pastime options from the start seems to be more difficult than finding a full time job.
I suppose I could start something full time and ask for a reduction later. But I’m a bit worried on how long I’ll be able to handle working full time.
Which field do you work in?
Not in one field specifically. But I have the most experience in software engineering, functional analysis, and tutoring (university-level)
Have you considered switching professions?
What about retail worker in a grocery store?
Telling a software engineer to work retail is a punch in the gut.
You might think so; But I used to do software, and now I'm starting retail on thursday. Wish me luck!
How do you pay rent? None of the jobs in retail here pay anything close to what you would need to make ends meet.
I guess living in Europe does something to lower your Cost Of Living; Also, I share my apartment with two other people, so we effectively divide rent by 3. That also helps.
I have considered changing professions in the past, but i don’t think I could do a switch at this moment.
I don’t think i could easily find a job in a different field and I’m a bit worried that I would get lost and lose energy, even in seemingly simple jobs.
I understand that.
I was just considering that maybe, if you try something different, you might find a surprising amount of satisfaction in it; and be grateful for some change?
There is truth in that.
I actually like the things I do for work though. Or at least I like doing those things by myself for fun.
After having worked in the field for a few years, I noticed my enjoyment seems to have disappeared. Perhaps it’s the hours, or perhaps it’s the way that business can make anything boring. But I just didn’t like doing these things anymore.
And if I don’t like the things I really enjoyed in the past, then it feels like I will surely not like those things i disliked in the past.
I will still try though. But not easy to experiment with new things when you feel like you’re in survival mode all the time.
good luck!
Based on some of your other comments, it would be interesting if you logged your blood pressure and pulse throughout the day. Once in the morning, before/after meals, evening, and whatever times seem like they may be relevant.
I got a simple automatic cuff type from the grocery store. They make some that can do it on your wrist too, which is a little easier to carry around. Mine has a history function. Smart watches/trackers can monitor your pulse more often.
Check your blood work. I get all the details in MyChart (Epic) and can even compare from previous results. If there isn't an app, get your records and input it manually in a spreadsheet or other app that hopefully doesn't harvest your data. If they are not doing regular blood work a couple times a year, they are doing you a disservice.
How is your sleep? You may not be sleeping as well as you think. This is priority 1. Wash your sheets. Clean sheets are awesome.
You could be depressed or have an undiagnosed mental illness. This is ok, but you have to talk to someone. It is hard as hell to make that phone call, but your mental health is worth it. Your mental health is worth everything. I did not check if you were female, but note that birth control can cause this shit. Hormones suck.
I think you said you were in pain or discomfort? If you are, take notes on the type of pain, where, how often, duration and anything you were doing. By the time I get to the doctor, I often can't visualize or remember the exact sensation. You could easily have something in your environment bothering you, a food allergy, gall bladder issues, thyroid, or a whole host of random shit. Switch to fragrance free laundry detergent. Maybe cut out caffeine. Just be sure to only change one thing at a time.
Don't let doctors gaslight you or downplay your issues. Advocate for yourself and take notes. You can even have a friend go with you to the doctor if you have a lot of anxiety. They can take notes for you and potentially give insights and ask questions you may not think of.
This. Especially looking at the quality of your sleep (poor sleep can trigger or exacerbate depression). There is a high prevalence of sleep-related issues in the autistic community. If you haven't had a sleep study done, I recommend doing it (it's uncomfortable and not a good night's sleep, but it will help identify issues such as sleep apnoea or restless leg syndrome).
Also go through all the typical sleep hygiene stuff (I know it can be annoying and tedious, but these factors can play a bigger role in autism than for neurotypicals due to sensory issues) such as temperature, noise and light. Are your pillow and mattress comfortable and providing the support you need, or are you tossing and turning, or waking up sore or uncomfortable?
It's hard to come up with a specific answer for this because everyone is different. I think you might be better served by asking this same question to a qualified therapist who can help you work through it. It could be as simple as "You need to force yourself to get up and get more exercise" or as complex as "You have clinical depression and you should be medicated if you want to feel normal again".
For me, I used to feel the same way after work. I would just come home and veg out, not care about much of anything, and take very little joy even in things I liked. The thing that snapped me out of it was my failing health causing me to be forced to switch up my diet and go to the gym a few times a week. It wasn't easy to get started, but once I was about 2-3 weeks into my new routine I was feeling more energetic and motivated. I noticed I was getting better sleep too which made me feel ready to tackle the day every morning that I woke up for work rather than dread going in.
Again, your mileage may vary, I would strongly advise to speak to a doctor if you are having difficulties with this issue to the point where it's negatively impacting your quality of life. Don't put it off until your health is impacted like I did.
Would be good to have a professionals opinion on it for sure. I haven’t had that great experience with therapists though.
Not that they were bad, but they didn’t seem to understand how a lot of things simply didn’t apply to me or affect me differently.
Most of the advice I got, I already understood very well. Or researched by myself in detail. But there always seems to be a point where it comes down to ‘just do it’ and I don’t manage to. Or only for a certain period, and then everything collapses again.
I think one aspect that’s especially difficult for me is that I can’t tell when I’m doing better. After I start some routine for exercise, I just don’t notice any significantly difference over a period of a month or so. (In terms of mood specifically)
Eventually I give up, because it seems like it’s having no effect, but still requires significant time and effort.
I'd recommend reading this article about authenticity: https://www.meticulon.com/neurodiversity-celebration-week-2024/ It explains a lot about how little things that NTs take for granted can be exhausting for ND people, particularly at work.
I'm no doctor but I've been living with this my entire life. I'm only realizing recently that is not normal to be in constant pain and so chronically exhausted that even my libido has almost completely died. i am now seeing a cardiologist and had to wear a heart monitor for 2 weeks and get an echocardiogram, because i was nearly passing out from very light work in the heat. my doctor suspects POTS and i know that I'm hypermobile, but having trouble qualifying for testing for Ehler Danlos. these conditions commonly present together and pretty much take you out of commission. definitely see a doctor.
doctors will probably give you the run-around at first and say it's depression. well, let me tell you from extensively researching my symptoms, that depression can develop from these symptoms, it's not always the cause. i am depressed and anxious because I'm constantly in a state of pain and exhaustion and nothing i do is ever enough to keep up. it's a horrible way to live and I'm hoping for answers so i can at least have guidance from doctors on minimizing these things.
EDIT: i now see what community this post is in. POTS and EDS are higher in the autistic community. read a bit into those conditions and see if you relate.
I actually went to the doctor once because I almost fainted when taking a blood pressure test. I have this occasionally, also when riding a bus or train when it’s hot outside.
They did some basic tests, but didn’t do a tilt test because at that moment, i didn’t seem to have any issues.
Actually, most of the time I go to doctors, they say I’m perfectly healthy and nothing is wrong. But I do feel uncomfortable and painful relatively often.
I also think that when I visit any doctor, my heartrate shoots up, which brings it closer to the normal or higher range. Even though from day to day, my heart rate is typically very low and I frequently feel like blacking out when standing up.
I don’t really have a strong mindset though, so i will typically not challenge a doctor’s opinion. Especially not when I’m feeling low energy and tired (which is usually when I go to the doctor)
you sound a lot like me, until i got scared i would lose my job. i haven't tried talking to doctors about this for years because i was dismissed without tests or anything and i didn't have a frame of reference to tell them how bad it was. i finally just laid it all out to my doctor, almost crying because i was taking at least 1 sick day a week at that point. i waited WAY too long and my body literally said "fuck this" and stopped. but i have a more active job, so i am literally unable to perform my job duties at times now.
I'm really hoping for some help, but neither of those suspected conditions have a cure, you basically just learn how to live with it.. good luck to you on your journey.
Have you checked with a doctor? There might be a medical cause.
I mean, work sucks, but unless you're swinging a sledgehammer all day, it shouldn't drain you completely the way you describe.
I did. And usually they say I’m perfectly healthy and recommend me to see a psychiater.
For some reason I feel like there is still something else underlying this though. Usually when I’m feeling depressed or anxious it’s because I’m also feeling uncomfortable or painful in some way. And it passes after the pain is gone.
But I have no idea how to describe this to the doctor and all their basic tests just show nothing.
I also don’t feel particularly unhealthy, i eat quite well and do exercise (although not super intensive)
I’m really jealous when I see these older colleagues who smoke multiple times per day and are visibly overweight. And somehow they have 10x the energy of me.
Sometimes I wonder if people around me are all on performance enhancing drugs or something. That’s what it feels like. I tried drinking coffee in the past, but I can’t really deal with the taste, and it seems to make me drowsy for some reason.
Do you trust the doctors with your life?
Remember what they call the person who graduated in last place from medical school: Doctor.
They aren't all bad, but many are overworked, too busy to focus, and perhaps burnt out. They also might need a full history over time to make a diagnosis. By way of example, during an annual physical, my doctor noticed my weight gain, and said there was no way I could gain that much weight in a year without something wrong. He ordered blood work and found a thyroid disorder. That also explained why I had no energy to do anything more than the bare minimum to survive.
Looking just at thyroid disorders, a doctor might just check TSH (thyroid stimulating hormone). The "normal range" is 0.5 - 5.0. So your TSH could be 4.9, and your doctor would say it's normal. However, I know a bunch of people with thyroid issues, and everyone I know feels "normal" when their TSH is close to 1.0.
If your doctor orders a thyroid antibodies test, they could discover Hashimotos Thyroiditis (which happens to be my diagnosis, as well as my wife's and my three children). Basically that means your immune system is attacking and destroying your thyroid gland. When she was first diagnosed, my daughter's TSH was normal, but the antibodies test was positive, so they knew it was just a matter of time.
How do you make sure every possibility is covered though?
I don’t really go to a doctor regularly.
Do you think I should? And try to find a doctor which seems competent? But how do you evaluate this? And how regularly should you visit a doctor?
Usually when I finally get to a doctor, most of my symptoms are already over. When feeling bad, I typically won’t make an appointment because I feel mentally incapable. Unable to make an appointment, get there, and then manage to explain what is wrong.
That sounds almost impossible to me.
You should go to the doctor at least once a year. They can check you out in a physical, and order blood work, and see how things change over time. It's also easier for them to deal with other routine illness when you've been seeing them regularly, and they can make sure you're getting your routine vaccinations. It doesn't matter if the symptoms have passed. You can still describe them to the doctor and they should still consider them.
Regarding how to know if the doctor you're seeing is competent, a lot of that is how you feel when you're with them. How do they treat you? Do they remember what you told them last time? Have they been thinking about it, reading about your symptoms, looking up possible causes?
Regarding a psych referral, it depends on how that was brought up. If they mentioned that some of your problems sounded like depression, then they might be suggesting that there's something there for you to deal with. However, if you think there's a medical problem, and the psych referral feels to you like they're not trying, that's a bad sign.
"To a hammer, everything looks like a nail"
A medical doctor should be looking for medical causes for symptoms. The way they come to a diagnosis is by identifying possible causes and ruling them out one by one. If they jumped to psychological causes without ruling out medical causes, I'd be concerned that they aren't really trying.
When I started seeing my current doctor, I already had two issues that had been diagnosed: Hashimotos Thyroiditis, and gout. When I came to him, I wanted to avoid taking meds for the gout, so he recommended drinking coffee to prevent flare-ups. In that first visit he also gave me a referral to see a sleep specialist because he thought I had sleep apnea.
I ended up having a sleep study and got a CPAP machine. That allowed me to have actually restful sleep for the first time in years.
Each time I returned, he had done more research into what my issues were and he had new things to try. He also has my family medical history, so he's watching out for issues that I might be prone to because of genetics.
I'm on medicine to reduce uric acid for the gout now because he had done additional reading and in one of my appointments he explained that new research showed that the high uric acid that causes gout flare-ups could also cause other issues due to causing general inflammation. Even though the coffee was preventing severe flare-ups, he convinced me to try allopurinol to reduce the uric acid.
He's also been concerned about the weight I gained due to the thyroid issues, so he's been working with me to help me lose weight.
What I'm saying is, after every visit, I leave feeling like my concerns have been addressed. He listens to what I'm telling him, and responds to what I say.
If you're not happy with the doctor you've seen, you should seek out someone who you feel comfortable with. My current doctor isn't the first doctor I've seen. There were probably five or six doctors I've seen over the years that were underwhelming before I found him. One good way to find a doctor is to talk to friends, family, or coworkers and find out if they have a doctor they like.
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