Not at all sure I fit in here

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Aww thank you Kate that's really sweet of you to say! Thank you. I think you are the exact same but even better. Every message you write just shows so much intelligence and understanding. The world could do with more of you.

I think you're right about it being autism paranoia. It's so easy to become paranoid about these things. I'm always feeling this way.

vol au vent is just inherently funny isn’t it?  :) 

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.  

The tomato thing is great. I do love an enjoyably random word being assigned to an 'about as 'X' as...' My favourite might be "come and see the TARDIS. As an invasion weapon it's about as offensive as a chicken vol au vent" 

Food items clearly work particularly well! 

Sorry, that just got extra random. Back on topic. 

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. 

I can imagine. You have a good and resilient attitude - out of necessity I suppose but it's still inspring to see. 

My situation was not helped by not only the failure to provide appropriate and timely help, but by incurring disapproval for not living up to the misguided expectations of how I should be. 

It means there's a wide gap between what could/should've been and what actually is.  Adjusting to that reality is sometimes very hard., but is essential  to avoid slipping further and further into a 'pit of utter despair'

Such a relief to see others talk about the reality of this as a lived experience. The practical guarantee of it in those sorts of situations, or in the shivery immediate aftermath of an only moderately-taxing (in most people's eyes) night out. By night out, I only mean an occasional trip to the theatre with a couple of friends, a catch-up in a coffee place, a meal and conversation. Or, as you say, sometimes everyday experiences like the supermarket, navigating a busy crowd, or anything similar. And especially if the chance to rest after work and before heading out the door has not been there. Autoimmune feels very intuitively connected with it yes. I always end up soothing a rapidly developing sore throat with a hot cup of tea after such things. And otherwise a lie down and as much heat absorption as I can manage helps to get recovery underway. This would sound crazy to many I'm sure but this is a safe-space for such honesty, so I'm laying it all out there!

Yes, I used to think that I was ambitious but really, knowing what I now know, I think that was actually part of a mask that I'd felt bounced into projecting for years and years, from my earliest schooldays onwards.  I needed to shake free of all that to avoid becoming ill and burning out, time after time. 

So I might have seemed high-powered.  But underneath....   tomato!

Autoimmune.  Yes, absolutely.  I get a fair amount of that too.  And, although I did manage to work (and still do a little) it feels very much as though I'm allergic to some work places.  Ermm...   and some supermarkets...  and some people...   Anyway, I come back feeling very eroded and need some serious time out, sometimes needing to lie down in a darkened room for a while before I feel I've come back into myself.   

Very similar situation here. I'm not ambitious, never have been or will be. And I know that I've found the perfect level and role for me for realistically coping long term, minimising stress, and avoiding total burnout. I did unfortunately let myself get into a horrible status anxiety nervous breakdown scenario about four years ago. Not because of some unfulfilled ambition (I don't have any, certainly not with a capital A) but because I could sense how increasingly atypical I was in not wanting to try and jump that chasm. (one or two past mercifully failed attempts to do so were always accompanied by a feeling of 'who am I actually doing this for?') And in understanding that for me it would be a disaster on several levels if I were to secure a higher 'professional grade' role, and yet that sense of comparison and conformity closing in (largely unspoken but coded into everything around me - and the statistics, when I got unhealthily fixated enough to deep-dive into them to the point of nausea) left me feeling like I was just massively rubbish and ineadequate, and being laughed at by the rest of the world. When in fact, the rest of the world doesn't care, hasn't time to care, and hasn't even thought about these patterns and numbers that I was taking as the basis for their imagined disgust at my continuity in one role.

I've made myself let go of all of that, as it was horrendous to live with that constant paranoia and self-torture. Occasionally, some random unflitered comment from a colleague triggers me to start almost unravelling again, but I know the exhausting path it leads down - the 'scenic' route back to the same place of 'I'm not designed for ultra orthodox conformity (and once I hit a certain momentum with it, I don't stop until I've made myself very ill), so I'm not playing that game and I don't have to - I am free'. I feel like there's nobody on here who won't be able to relate to some dimension of that. To my mind, firemonkey's situation and mine essentially equate. I just happened to find an uncommon niche in which I could eke out a low-stress 9-5 living and still pay bills with my modest but fair wage. It could easily have been different. We're each finding a way to function and stay as stable as we can in a world that's not yet adequately designed for the neurogivergent too. 

Shardovan said:

It gives me almost flu-like symptoms recuperating afterwards.

That's absolutely fascinating and so applicable to my situation , whereby acute/intense stress can bring on a flu like reaction and/or derealisation. It's something I've been mentioning for well over 2 decades, but you are only the second other person that has mentioned such symptoms. The word that instantly springs to mind is 'autoimmune'

Oh, the flu like symptoms.  I can certainly second that!  And I think we have to do a kind of "energy accounting" to enable us to get by.

Firemonkey, your honesty is actually very refreshing and I think that many will relate to your posts, even if they don't feel able to discuss their own circumstances.  Your presence here is extremely valuable and the forum would be poorer without you.  After all, we're all here for reasons relating to difference and neurodiversity, so it's essential for it to feel welcoming and inclusive of all aspects of that diversity.  And this includes any co-occurring conditions - many of us have several of them!   

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.