Not at all sure I fit in here

I really like the things this chap has to say about the societies we've been brought up in: https://autcollab.org/2020/09/02/pathologisation-of-life-and-neurodiversity-in-w-e-i-r-d-monocultures/

It's hard to work out how to filter out what is not important to look at for a proper evaluation, even if it's just to find a direction for growth. 

But doubtful anyone here has a high powered career. I've been fired so many times for my autistic traits and also have found I've been on the brink of homelessness too many times. I honestly have no idea how to sustain a future, just keep putting one foot in front of the next and have found grounding principles (sometimes mottos) to allow for certain variables or changes in life.

I've never had a career, indeed any paid employment at all. Soon after my 1st hospitalisation I did voluntary work going round  wards with the hospital library service. It was a disaster. I didn't know  how to approach the patients and what to say to them. I still find it very difficult to initiate conversations. I lasted about a week.

I've never found anything that ticks all the boxes re what would've made a paid job a viable option for me. In no particular order of importance- 1. Near home. I have a poor sense of direction 2. Non manual, but also not highly competitive and stress inducing.3.Difficulty initiating conversations with fellow workers wouldn't be a problem. 

Very few people openly admit they've never had a paid job. Perhaps I'm rather naive in doing so. The impression I get is that there are very few people like me,re never having a paid job, unless they have a severe intellectual and/ or physical disability.

Honesty is always the most healthy thing, and there's no reason you should feel any need to hide the fact that you exemplify a hopefully more commonly occurring scenario: the social support and health infrastructure detecting and assisting more hidden (but equally/more debilitating) factors that massively affect a person's life and ability to function (to NT normative standards) 'out there'

It's inevitably taken a while for things to begin to evolve adequately towards that kind of sophisticated detection, understanding, and support - and you were on the vanguard of its earliest (very far from adequate) tentative steps to giving you stability without paid employment. I think it's great that you tried voluntary work too for a time. I'd like to do something like that at some point but I'd have to choose something I can realistically audit my energy levels/spare time around.  As I seem to need way more rest/recovery time  than the average person. 

I'm like a zombie at work today after doing one thing after work last night (going to see my nephew in his end of primary school show - which I wouldn't have missed for the world) that extended/overbalanced the amount of continuous sensory input I can handle on any given work day. It gives me almost flu-like symptoms recuperating afterwards.

Jenny you’ve said exactly what I was thinking :) 

Also a human being has value independently of any of society’s inventions and conventions. And paid work isn’t automatically superior to other kinds of Labour just because it’s paid. Mothers aren’t paid but it’s recognised by most people as one of the most important ‘jobs’ in the world. Money is just a (rather trouble causing) invention - we should never judge ourselves or others on how much cash they have in the bank. 

My office work (now thankfully in the dim and distant) made me feel like that.  Fans and computers whirring in an open plan office and windows that would only open to a degree.  Plus lots of background noise generated by phones, others chatting and intermittent team meetings.  In the end I kept closing down or sort of freezing, unable to fully be there but feeling obliged to stay anyway and developing headaches, severe tiredness and the feeling of a heavy cold coming on.  Also my skin and hair started feeling full of static electricity.  A couple of people (otherwise very nice) just half jokingly told me to get over myself!

I couldn't go back there.  I think I'm like a rechargeable battery on the wane.  I can be recharged a few more times but each time the recharge takes longer and lasts for a shorter period.  I ended up feeling as though I just wasn't meant to be there.  And, surprise surprise, my boss agreed with me cos she made me redundant!   

This is a 'great' day to talk about such symptoms actually. As I have seemingly zero capacity to focus on work tasks right now. A combination of last night burning me out on sensory overload, insufficient chance to rest since, and conditions in the office  this afternoon being the perfect storm of sensory discomfort: loud noise from fans and roof machinery through the open window, a constant feeling of being very cold (even though others's use of the fans and open windows suggests the opposite for them), and overly-abundant light from the window (at least some distance away from my desk) and strip lighting at the opposite end (thankfully) of the office. When I put my sunglasses on and/or hoodie on and up to compensate against these factors, someone will pass by, stop, and make an (admittedly amusing) comment about me trying to look like Eminem or something, but then I get self-consious enough to divest myself of these things for a while again and just be distractedly frozen, dazzled, overwhelmed by constant noise. Then, when fewer are about, sneak them back on again. 

Where I'm physically hit hardest right now: a feeling almost like swollen glands in my throat, as well as like I've been gargling razor blades. Freezing head and ears and neck. A lot of tension and inflammation in my diaphragm and torso. I've been this way many, many times, but age seems to be making me less able to just sit and take it without some sort of give. My overhelm point seems to start lower. I suppose that is just one of many things that pushed me towards finally seeking out a diagnosis. 

When I get home, I'm not sure if I'll need to sleep even before I eat - and I am hungry! If I do the latter first, I'll go into a deep sleep almost instantly after anyway. And I have no idea how much of my evening will disappear off into sleep, but I suspect quite a lot as I'm twice as fatigued and head implode-y as usual.  

Yes, it feels like I just hit a wall and need to revert back to "safe mode" while I recover.  Maybe I just don't have the necessary "bandwidth"?  It doesn't feel like ordinary fatigue. 

Sustained rest acn be so restorative but it sounds like you share what I need: it has to be in a dark or softly lit place with reduced ambient complexity and ideally with an infusion of heat back into the body beyond what most others would need even if they were having a 'power nap' or whatever. It's a deep fatigue well beyond the old 'forty winks' scenario. 

Yes, definitely.  I get those symptoms quite regularly and indeed have thought I'd caught Covid a few times over the last couple of years.  At the time I thought I was facing serious illness, the prospect of hospitalisation (especially with all my other health problems) and possibly a lengthy recovery.  But silent solitude, a darkened room or a very long sleep led to a recovery each time.  

My sister gets migraines and urticaria, which also seem to be an adverse reaction to stressors, and sometimes needs to rest in bed or under covers in the living room for several days.  

So there's a definite need to retreat to regain any strength. 

Yes, definitely.  I get those symptoms quite regularly and indeed have thought I'd caught Covid a few times over the last couple of years.  At the time I thought I was facing serious illness, the prospect of hospitalisation (especially with all my other health problems) and possibly a lengthy recovery.  But silent solitude, a darkened room or a very long sleep led to a recovery each time.  

My sister gets migraines and urticaria, which also seem to be an adverse reaction to stressors, and sometimes needs to rest in bed or under covers in the living room for several days.  

So there's a definite need to retreat to regain any strength. 

My office work (now thankfully in the dim and distant) made me feel like that.  Fans and computers whirring in an open plan office and windows that would only open to a degree.  Plus lots of background noise generated by phones, others chatting and intermittent team meetings.  In the end I kept closing down or sort of freezing, unable to fully be there but feeling obliged to stay anyway and developing headaches, severe tiredness and the feeling of a heavy cold coming on.  Also my skin and hair started feeling full of static electricity.  A couple of people (otherwise very nice) just half jokingly told me to get over myself!

I couldn't go back there.  I think I'm like a rechargeable battery on the wane.  I can be recharged a few more times but each time the recharge takes longer and lasts for a shorter period.  I ended up feeling as though I just wasn't meant to be there.  And, surprise surprise, my boss agreed with me cos she made me redundant!   

This is a 'great' day to talk about such symptoms actually. As I have seemingly zero capacity to focus on work tasks right now. A combination of last night burning me out on sensory overload, insufficient chance to rest since, and conditions in the office  this afternoon being the perfect storm of sensory discomfort: loud noise from fans and roof machinery through the open window, a constant feeling of being very cold (even though others's use of the fans and open windows suggests the opposite for them), and overly-abundant light from the window (at least some distance away from my desk) and strip lighting at the opposite end (thankfully) of the office. When I put my sunglasses on and/or hoodie on and up to compensate against these factors, someone will pass by, stop, and make an (admittedly amusing) comment about me trying to look like Eminem or something, but then I get self-consious enough to divest myself of these things for a while again and just be distractedly frozen, dazzled, overwhelmed by constant noise. Then, when fewer are about, sneak them back on again. 

Where I'm physically hit hardest right now: a feeling almost like swollen glands in my throat, as well as like I've been gargling razor blades. Freezing head and ears and neck. A lot of tension and inflammation in my diaphragm and torso. I've been this way many, many times, but age seems to be making me less able to just sit and take it without some sort of give. My overhelm point seems to start lower. I suppose that is just one of many things that pushed me towards finally seeking out a diagnosis. 

When I get home, I'm not sure if I'll need to sleep even before I eat - and I am hungry! If I do the latter first, I'll go into a deep sleep almost instantly after anyway. And I have no idea how much of my evening will disappear off into sleep, but I suspect quite a lot as I'm twice as fatigued and head implode-y as usual.  

Yes, it feels like I just hit a wall and need to revert back to "safe mode" while I recover.  Maybe I just don't have the necessary "bandwidth"?  It doesn't feel like ordinary fatigue. 

Sustained rest acn be so restorative but it sounds like you share what I need: it has to be in a dark or softly lit place with reduced ambient complexity and ideally with an infusion of heat back into the body beyond what most others would need even if they were having a 'power nap' or whatever. It's a deep fatigue well beyond the old 'forty winks' scenario.