@autoperipatetikos

I understand in many ways.

Recently, I have been thinking about all of the abilities I have lost.

It's been rough.

What may be helpful is to think of it as using the ability, or letting go of it, if it no longer suits your needs or purpose.

Still thinking abut how difficult it was for me to give up cooking. I could no longer do it. It was one way I had control over my life. As well as a major shameful PTSD issue.

So I found a place to move to move where they do the cooking, and I have enough (mental and physical) energy to still do what I can.

I hope you find a way that works for you. Maybe that energy can be redirected. Maybe you need to mourn something. We all do sometimes.

Getting old, especially as a routine focused autistic, is not fun.

@autoperipatetikos
other comments have said it better, but I really think that the "use it or lose it" phrase is incredibly ableist and untrue.

Sure, our abilities to do certain things wax and wane overtime, and things do change as we age, for sure, but this phrase invokes a scarcity mindset that isn't based in reality.

True that if you're, say, trying to build muscle in your 50s versus building muscle in your 20s, the process will be very different, and you won't gain as quickly as you would have when you were young, but 50-year-old bodies are very different to 20-year-old bodies.

To extend the metaphor, in certain cases of chronic illness, intense exercise can actually be damaging. It can also be damaging in recovery from long Covid, which mirrors CFS and ME in a lot of ways.

All this to say that yes, sometimes we do have to adapt our daily lives to what our bodies and minds can actually handle, but if a particular activity or ritual or chore is important and fulfilling to us, why would we be asked to give it up?

Sure, try it as a thought experiment, so you can understand potential physical and emotional outcomes of each choice, but also assess if it is actually damaging to you.

You are the ultimate judge on what is good for you and what is not good for you, and you are allowed to make mistakes in that judgment and make course corrections later. While it can be helpful to get an outside perspective, your final authority is you.

PS: I don't iron very often either, but I do find it incredibly satisfying because I'm skilled at it! That skill is not something that can be taken away, even if I choose to stop ironing for the rest of my life.

@autoperipatetikos

I have juggled feeling like this as well. I think these days I've learned to trust that my brain knows what it's doing and that's been part of my unmasking with autism coupled with the mecfs diagnosis around the same time.

The frustration of losing the ability to keep up with the life I used to have was a lot, and I still struggle with it, but I also realize that it was what caused massive burnout for me. I'm only just starting to realize what a rest actually feels like.

And yes, I have massive skill regression, but it doesn't mean they are gone forever, just that my brain has decided "not right now" for me. They do come back when the climate is right, which is always hopeful.

I think the most important skill I've had to learn is actively listening to my body and mind, which I had to learn to ignore to survive as a "seemingly functional" autistic person in the world. (AKA masked beyone recognition). It's a big messy slog, but so far a worthwhile one.

The physical stuff with the mecfs is the worst for me. I went from alpine backcountry hiking and nine years of daily kung fu training, to struggling with a walk around the block and it brings me to tears on the regular, but the research coming out, says that's mitochondrial and not deconditioning. So graded exercise is a no go.

That being said I try to move my body everyday doing something that brings me joy. Sometimes that's just standing in my garden outside with my cane or stretching or letting the cat smell a bush while we check the perimeter of the yard, and I know that's a privilege cuz a lot of people with mecfs can't have that. I see it as maintaining my baseline. Hope that helps.

@autoperipatetikos I'm doing OK, thank you. We're in the middle of a major kitchen project, but so far, the inevitable chaos is manageable, and I'm coping pretty well.

We moved to a bigger house, about 18 months ago, and think having more space makes it easier to manage the disruption. The kitchen cupboards are emptied onto the dining table, but we have another table now, so we can still eat together - that sort of thing. In the old house, I would have been pulling my hair out!