We should be able to talk about the good things about being autistic without being worried about the reaction. I do believe I am disabled and being autistic makes my life hard, but it is also the lens I see the world through and there are some good things about that.

I think the spoon theory is a great place to start to explain how chronically ill people feel day to day.

Exercise is contraindicated for people with ME/CFS. Full stop.

Those with mild disease may be able to do some gentle exercise, or even occasional long walks, but the body simply doesn’t respond the way it should. Exercise = stress for the body. Healthy bodies adapt, ours don’t.

Cardio exercise especially always carries risk for those with ME/CFS. Even when it’s mild. The usual benefits that healthy people experience from adapting to exercise don’t occur. Cumulative physical stress from regular exercise with ME/CFS may lead to a decline in condition.

Most of us do too much, because we hate being limited, we don’t want to be. But we are.

When I say “exercise is contraindicated” I am referring especially to it being prescribed as treatment.

Movement is important, as much as can be safely done, but movement ≠ exercise.

At some point, the disease process can wane & *careful* gradual increases in activity can be beneficial for rebuilding strength & ability.

But *only* when the timing is right & the disease has become less severe/your energy envelope has increased.

That can be very hard to know when that’s safe to do, usually only through careful trial & error, checking slowly and timidly for what can safely be done & where your new ceiling is. A good physio who understands ME/CFS can really help with this.

Obviously, these are sweeping generalisations of the population as a whole. There will always be some exceptions. Studies suggest e.g. that 5% of pwME may be able to fully recover.

But we still see far too many clinicians & researchers holding exercise up as a holy grail.

CW: upsetting question.

Why is our life expectancy deemed to be so low?

This scares me, especially as I find myself in a period of poor health in my 30s, that is being investigated, poorly.

Many of us #ActuallyAutistic folks like to stay in our homes and not go out into the wild. I often wonder if this is because that is what we truly want or it's due to trauma. What do you think?

#AskingAutistics

Many autists hold grudges for longer than is considered socially acceptable. This may be the result of: a strong long-term memory, RSD, PTSD and “time blindness”. We may: find it hard to forget others’ actions, be more affected by them and not get the “time to let it go” feeling.

It’s good to see lots of people with #LongCovid being prescribed Guanfacine in the US now after the promising Yale study. I’ll be following with interest. How long until someone in the UK manages to get a prescription?

Ppl who are house/bed bound due to chronic illness/disability aren’t enjoying some luxurious vacay. We miss out on a lot & it’s enough w/o being judged but ppl take it personal/think we’re doing it on purpose for some reason 🤔 Yes, my master plan was to miss out on my own life…

A disability is neither pitiful nor inspirational.

Being #ActuallyAutistic in our society means that we have experienced profound trauma in our lives. For many, that trauma is still present. We ignore it and try to work thru it, but it's there in our bodies & minds. We need to emphasize the need for trauma work in our community.

Having disabilities and health conditions that people don’t understand can often feel like drowning, and instead of people throwing you a life jacket or asking what they can do to help, they just argue about how deep the water is. #Autism #LongCovid