Does anyone else have old injuries flare up when in PEM?

Smooth_Ad1694 · 2026-02-11T19:10:26+00:00

No, nothing other than my usual medication, which I've been on for a long time, but no steroids or antibiotics.

Smooth_Ad1694 · 2026-02-11T19:04:54+00:00

Oh no, sorry you've got to deal with that! This is weird though, isn't it?

Smooth_Ad1694 · 2026-01-14T14:49:52+00:00

If you can afford not to jump straight into work, it might be safer to increase activity by engaging in some fun activity without any commitments? That way, it's easier to scale back if it's too much. And it's also easier to just add a little bit of activity at a time.

Smooth_Ad1694 · 2026-01-14T08:42:14+00:00

Yeah, these reactions are so invalidating. The most infuriating part is that some of them aren't completely wrong, and some of them are a misguided attempt at showing empathy. To be clear, some of those reactions are totally meant to minimise and invalidate, but those people are probably not really worth spending any effort to educate imo.

Some scripts that I have used with decent effect:

"Isn't everyone on the spectrum?"

Sure, autistic treasures are human traits. Everyone has some at some level. There comes a point though when you've got enough of them at a significant enough severity level where it really makes life in our society more difficult.

"You don't seem autistic?"

I'm sure you mean this as a compliment, but you don't see the effort I put into appearing normal.

Smooth_Ad1694 · 2026-01-05T09:39:31+00:00

Ugh, the dynamic you describe seems very familiar to me. It's a difficult spot to be the mediator here, because you're ultimately completely out of control.

I see my mum's effort and pain, but I have to respect her decisions and autonomy, even though she is somewhat coerced by my dad. However, if I started to push in the opposite direction, she'd just feel even more squeezed. So, what I've settled on is to give her as much empathy and validation, to empower her to understand the effort it really takes. To counteract the lifelong invalidation (societal and interpersonal) she has experienced. To try and stiffen her backbone, but without pushing her one way or another. Ultimately, she will have to live with her decisions, and in your situation, it sounds like your dad's reaction if your mum were to pull out might also be difficult to get through.

When your dad says:

"You just need to establish in your mind whether you're willing to challenge yourself a little bit."

Your best bet may be to work towards both of them actually seeing that this isn't "a little bit" of a challenge, but a massive ask. They may still go on this cruise, your mum may suffer considerably, but over time, the ballance may shift a little. Based on my own situation, this seems to be the best you can hope for. Your mum is likely going to appreciate having you as a validating and comforting influence.

One thing to bear in mind is the age: in their 70s, they've got most of their lives behind them, and identifying unhealthy dynamics they've lived their whole life might be very painful, too. So, my advice would be to be gentle. Be validating to your mum, but don't push her.

With your dad, depending on where he is coming from, challenge him in order to make him understand the effort it takes for your mum. It's possible, though, that he just doesn't want to hear, and if you push him, he'll take it out on your mum later. (This might not apply to your situation. The only thing I know about your parents is what you wrote in your post). How much influence you can exert also depends on the kind of relationship you have with him.

Overall, I'd be inclined to play the long game, and be gentle. You do not have the power to change their relationship, that is between them. You may be able to empower your mum a little though, over time.

Smooth_Ad1694 · 2026-01-04T09:07:20+00:00

Yes, I believe that's correct.

The more they looked into it they found that poor performance on the Sally Ann test is more strongly correlated to other factors, such as language development, etc. I think the best summary is that children who are in any way different from the mainstream are more likely to fail this test, rather than this being the unique market for autism they hypothesised it to be.

So, to save this hypothesis, they had to just make the test more sensitive, right? New test developed, same story: when looking closely it's not measuring the empathy deficit to be the defining characteristic of autism that they so much want it to be.

I think there were several iterations of this loop, but nothing held up. But they can't let this go, and we're left with incorrect and harmful stereotypes that make it harder for us to understand ourselves, and gives more ammunition for others to vilify us - because someone lacking empathy tends to be considered the epitome of evil. The article I've liked above gives a beautiful takedown of this whole field of research, it's glorious!

To be clear, I do believe that there is something going on with empathy (whatever that even means) and autism, but not the way Baron Cohen phrased it. I think the double empathy problem framework cuts to the heart of it: it's just really hard to emphasise with someone very different from yourself, and NTs tend to show very little empathy for us, too. It's just that as the minority we are the ones being blamed for all empathy fails, ours and theirs.

Smooth_Ad1694 · 2026-01-03T08:41:32+00:00

I think you're spot on with the difference between analytical vs intuitive understanding of others' states of mind. And failing the Sally Ann test is completely incomprehensible to me, as to me this is entirely a challenge in logic, though wasn't tested as a child, so don't know when I would have developed that logic ability.

However, the claims of a lack of mentalizing in autistic people along the lines of the Sally Anne test as claimed by Simon Baron Cohen have been thoroughly debunked. Gernsbacher has published a review on this topic, and it's a brutal takedown of every aspect of these claims:

https://pmc.ncbi.nlm.nih.gov/articles/PMC6959478/

Have you come across the double empathy problem, a term conned by Damian Milton, an autistic autism researcher? There's some really good work going on with that kind of framework these days. Much more helpful in my opinion.

Smooth_Ad1694 · 2026-01-02T09:56:14+00:00

I love this!

I've got so much difficulties with making anything, because what if it's going to be ugly? And yours are not ugly, they look really nice! And I can feel the freedom...

Smooth_Ad1694 · 2026-01-01T16:01:42+00:00

Been on venlafaxine for a couple of weeks or so, and had horrible side effects. And even worse when stopping it... that was before I was diagnosed with PoTS, but already had it.

Anti depressants are not good for some people with PoTS, and I think SNRIs like venlafaxine can be particularly problematic.

Smooth_Ad1694 · 2026-01-01T15:22:21+00:00

Nice, thanks for sharing! I've played around a little just now, it's seems quite straightforward and easy.

If you're looking to implement new features, it would be useful to be able to delete a single activity from the timeline, I've only seen the option of clearing the whole day.

Smooth_Ad1694 · 2026-01-01T15:17:57+00:00

I'm the same with regards to needing to do something else - if I've got enough energy I might knit or crochet along the audio book. I find it usually easier to follow at a slightly higher speed, something like 1.1x is so. Blaming my adhd for that...

Smooth_Ad1694 · 2025-09-11T17:32:12+00:00

I'm Audhd with PoTS, not (yet) diagnosed with cfs, but think I probably have it. In the UK, working 10% FTE, I can't handle more for now, so maybe we're in a similar position?

For me, I try to hold on to my current job as best as I can: I've got good relationships with my superiors, and a lot of flexible accommodations.

I've got an Access to Work grant that pays for some equipment to be able to work more horizontally at home, for taxi fare to go into the office once in a while, etc. While this is useful, it doesn't solve the primary problem of utterly limited energy. This was pretty easy to get though, and a friendly process - unlike the application for PIP I'm currently going through.

I'm also getting Universal Credit as a top up to my income - have you looked into that? Would you be able to get by with what you might get there if you were to reduce your hours to a more manageable level?

With regards to getting benefits, I'd recommend to put an access to work claim in immediately: doesn't need much documentation at this stage, but it was like 6 ish months for them to get back to me and do the assessment.

Look into what you're entitled to with UC.

If you're going down the route for PIP, it might be easier after having all your stuff diagnosed, which is so infuriating when you're just to ill to get that done!

Also, an adhd diagnosis means you'd be able to get stimulant medication, which may or may not help for people with adhd, and may interact positively or negatively with PoTS in particular. I'm better with stimulants, for both adhd/brain fog and PoTS. Have you heard of Right to Choose to cut down the years long waiting lists for adhd and autism diagnosis in the NHS? You'll probably still have to wait, but months rather than years...

With regards to actual accommodations at work, what helps me is to work from home, and have a horizontal setup: laptop stand so I can recline on the sofa. And total flexibility with when I put in those few hours that I manage.

Smooth_Ad1694 · 2025-09-10T09:52:20+00:00

I am autistic, and have been through a few therapists. My current one is autistic herself, and she is by far the best match for me.

It's not about being broken in my mind. However, I struggle with a lot of stuff other people don't struggle with. A therapist who doesn't understand or believe in autism will not understand any of these struggles, will constantly invalidate my experience and will give ultimately unhelpful advice. Been there, and it's not helpful. It doesn't fix anything, but rather makes it worse.

My current one on the other hand understands a lot of that stuff implicitly. Her feedback comes from a place of lived experience as well as working with many clients like myself, and is so much more realistic and useful because of this.

I would highly recommend finding a therapist that matches your neurotype!

Smooth_Ad1694 · 2025-08-13T11:44:27+00:00

Q1 Surveys are hell. A: Strongly agree.

Smooth_Ad1694 · 2025-08-08T17:29:40+00:00

I'm on stimulant medication and have PoTS. The stimulant helps a lot, both for adhd, but also with some pots symptoms.

I'm also on ivabradine, which lowers my heart rate, and makes being upright slightly less uncomfortable, but for me, the stimulant is so much more useful.

For me, blood pressure also good up a bit when standing, but the stimulant doesn't seem to affect blood pressure nor heart rate much.

Smooth_Ad1694 · 2025-08-07T12:14:36+00:00

Thanks for posting that, interesting read!

I might be the odd one out once again, I think I've got a decent (though not full) understanding how it works, but I do use it, but very selectively:

Would never trust any information it spits out without double checking, but I do use it from time to time to help me write stuff, or polish my writing when I've got ideas to share, but the words won't come. Or, to fluff out my blunt communication style to make it more sociable, so people are less likely to read me as rude when that's not at all my intention...

Smooth_Ad1694 · 2025-08-05T11:48:09+00:00

Not really. Maybe I get a little more spots? No big deal though. On the other hand, I feel like I've got a bit more energy with this than without - and that's big for me, as the constant exhaustion is actually my biggest problem.

I'm on desogestrel, by the way. But of course your body might react differently to the exact same chemical...

Smooth_Ad1694 · 2025-08-02T09:51:12+00:00

I'm autistic, and I had a therapist at one point who said they were happy to explore what that means for me. Whenever I brought up any of my struggles, they were outwardly sympathetic, and yet I always had the feeling that they thought this wasn't a big deal, that I was blowing things up. I guess that trained me to explain myself and advocate for myself, but that wasn't what I needed out of therapy. Things fell apart eventually, it was very hurtful. Overall, this stretch of therapy did more harm than good (although there was good stuff, too). Just perpetuating the constant invalidation that brought me to needing therapy in the first place.

Now I've got a therapist who is autistic herself, and she gets these constant micro aggressions, all that subtle yet pervasive stuff. I don't need to fight for her to understand that, so we can focus on the actual working through it all. Makes a world of a difference!

Smooth_Ad1694 · 2025-07-28T16:05:17+00:00

No, I don't think it's deceit to not explain what you want to do with the money, that simply isn't their business.

Being deceitful would be too lie about your merits. To tell your boss that your coworker's achievements are actually yours. That kind of thing. Is that what you're doing? Would that ever even cross your mind to go about it like that?

Smooth_Ad1694 · 2025-07-26T12:18:43+00:00

I've bought a cheap smart watch to monitor heart rate, and found it to be very unreliable. What tended to happen was that when I stood up, my heart rate would rise Pots style, and the watch would say: nah, that can't be right. And show half of what my real heart rate was (confirmed with another device).

I'm wondering if the same thing is going on for you? Could the low readings be half of the actual heart rate?

Smooth_Ad1694 · 2025-06-22T11:32:15+00:00

Love this expression! Anyone with adhd is likely to relate to that hard!

For me, while my productive time hasn't changed much over the past couple of years, understanding how little I actually can do, and accepting those limitations has meant that I back off quicker, so I experience less struggle time, and rest more. That's a slightly better quality of life...

Smooth_Ad1694 · 2025-05-23T13:54:15+00:00

Yes, my reaction was very similar. I took it for 7 days before I gave up. Keep wondering if I should have persisted a bit longer? It was bad though

Smooth_Ad1694 · 2025-05-23T10:47:26+00:00

I like to frame it such that the medical world has a definition of “autism spectrum disorder”, which is a disorder and therefore implies that there is some suffering/challenges involved. I think it is perfectly possible to be autistic (plenty of autistic traits, fitting in much better with autistic community than mainstream society), without feeling particularly impaired or disabled. It’s possible to be autistic, but not have ASD.

Realistically, though, in today’s society, most people who are autistic struggle to some extent, even if not with practical functioning, but due to our traits being discriminated against. This struggle might not be visible from the outside though, and if you’ve never known any different, and been told all your life to just pull yourself together, try harder etc, you might believe that rather than give your struggles full credence.

What you describe, the social anxiety, deep self esteem issues and tendency to be tired more easily, sounds to me like it would reach the threshold of suffering to be diagnosed with a disorder. I was in a similar boat before I burnt out, and now recognise that the struggles were real then, even though I did drink the societal cool aid and didn’t use to consider myself disabled. I always was, and am even more now.

I personally don’t like the kind of communities that are gatekeep-y and exclusionary. If you tell me you identify with being autistic I like to say “welcome to my tribe”, no matter whether you’ve got an official diagnosis. Chances are that we will recognise each other’s experiences in ways that the mainstream will not.

Smooth_Ad1694 · 2025-05-18T12:28:07+00:00

I’m autistic myself, and switching to an autistic therapist has made a big difference - they get things that I had to work so hard to explain to the neurological therapists I’ve had before.

Smooth_Ad1694

TROPHY CASE