@autistics

Last night I had a very broken night's sleep, culminating in waking early and not being able to get back to sleep. I tried to make up for it with an afternoon nap, but that too wasn't great. But then, for a while now my sleep has been disturbed, well, even more so than normal. Not the dreams themselves, more the feel of them. They have been like endless scenes from a film, of some perfectly normal and every day activity, but with the background music being all suspenseful and foreboding. Although, without any clear reason why.

Well, today I realised why. I don't know how common this is for autistic's, or whether it is more of a late realised thing, brought about by decades of our experience and ways of understanding something, especially of a deeply personal, or emotional nature, being denied and in many ways gaslit as inappropriate, or just plain wrong. But when I am dealing with things like this I tend to do a lot of the processing in my mind behind closed doors, so to speak. Only when certain conclusions and consequences become obvious do they begin to creep out into my conscious mind, often, at first, into my dreams.

In this case it has been the understanding that I am far more disabled now, than I was before Christmas and my back collapse and that this isn't going to improve. I have accepted, for some time now, that I am disabled. Both by simply being autistic in this world, but also because of the physical limitations of my back and chest (asthma/COPD, if you are unaware). But, to have to face the fact that it could suddenly get worse, especially without any apparent cause, as my back did over Christmas, is somewhat of a bitter pill to take. It introduces a level of uncertainty and lack of control, which is difficult for me as an autistic.

But, I also know that it is the nature of being a spoonie and what my mind has been trying to get me to accept. That if a good day is suddenly reduced to being able to do a load of washing and because I could actually get dressed, sitting in the sun for a while, as mine was today, because that's all my spoons would manage. As opposed to being so much more active, as I was used to being. Then that is the nature of the beast and that is what I'll have to get used to and begin to think about, as I plan my days and time spent.

It may not be ideal, or preferred. But, anyone can become disabled, at any time and it's rarely a stable, or static, condition. Ignoring that, or judging yourself by the standards of yesterday, does no one any good, least of all yourself. Or, at least, that is what I'm trying to tell myself (through writing this, as much as anything). That this is the new normal of my life now and I have to come to terms with that.

#Autism
#ActuallyAutistic
#Spoonie

@pathfinder "being denied and in many ways gaslit as inappropriate, or just plain wrong"

Describest 95% of my dreams. The worst, is me trying to tell them the reality of myself, and they ignore me and walk away, and I feel their disgust with me, which is completely their own imagination... within my common dreams.

Having FMS since I was 12, and bi-polar since birth, everyday is like the roll of the dice, without any obvious reason why: I wake feeling great, or wake feeling like a train wreck.

@GreenRoc
  Not a nice way to live 
@pathfinder Nope. I dont like this life. I deserve better, ans so do you. 
@pathfinder @autistics
I don't know if you saw my last post, but I'm going through similar things. I feel that, in addition to having chronic illnesses and being autistic, the other underlying problem is that we're getting old. And even if we were healthy, the advance of age brings a natural decline in vitality. It's not easy to discern which part of the decline is illness and which part is aging. But I do know that I'm getting old, that's for sure. Perhaps one of the hardest things to accept is the loss of oneself. In my early years as a therapist, in the early '90s, I saw many elderly people, and I thought that one day I would reach that age. And now I'm there. It's no consolation, but it's interesting to know that it's going to happen to us all anyway.
@cesarpose @autistics
Yes, I read your post and you're right, ageing tends to worsen everything. Even without being chronically ill or disabled in any way.

@pathfinder @cesarpose

R.e. ageing: getting old may suck, but it beats the alternative.

Not my line, but it's one that eases the loss for me.

@pathfinder @autistics
It's true. Just a week ago, I went to a family gathering that went on late into the night and was very noisy. I went to bed much later than usual, and then I was sleep-deprived for four days, sleeping poorly and having nightmares. Not to mention that all my illnesses and symptoms worsened, even my autistic traits 😞
@cesarpose @autistics
Because of last night's sleep, or rather lack of it. Today, outside has been mostly, bloody loud.

@cesarpose @pathfinder @autistics

Sandra Thom Jones, autistic academic, is writing a book on autism & ageing. I look forward to reading it. There’s so much we don’t know.

I’m sorry to read about this new layer of disability Kevin. I think us late diagnosed/realised neurodivergent people, most of whom have masked furiously & lived in denial of disability for so long, have so much internalised ableism to deal with. A new & significant physical disability is so much harder to deny & mask. But maybe it helps us to be more honest about our disability more generally? Or about how disabling our differences have been, as a consequence of society’s failure to compassionately accommodate us?

I’ve taken to using a set of hiking poles when I go out walking (not β€œhiking”, just walking to the local shops or park etc). I don’t always need them, but when I do… They help my back so much. I found it easier to purchase a pair for my oldest, diagnosed with fibromyalgia, than to confront my own need for them. I feel self conscious using them… but if I don’t accept & accommodate this level of disability, my life will be unnecessarily hugely limited & restricted. Waiting for my back to β€œget better” seems pointless. It will sometimes be β€œgood”, but probably more & more often, not.

@Susan60 @cesarpose @autistics
It took me a long time to over come my ableism concerning the disability of being autistic. As someone with a long term chronic health condition, admitting that I was physically disabled was easier. Although, for some reason admitting that it is degenerative, and suddenly experiencing that, is harder.
I have started using a walking stick when out and about, although I haven't had a chance to thwack any uppity kids with it yet πŸ˜†, I look on it in the same way as wearing glasses, you'd be a fool to be vain about it. Not when it can make such a difference.

@pathfinder @Susan60 @cesarpose @autistics

As we age & become more disabled, in whatever ways that manifests for us, it is affirming friendships with our peers that help us face down the disdain, denial & shame about disability & ageing to which we have been acculturated. It’s our embracing of our ageing, as our glorious neurodivergent selves, that will contribute to shifting those cultural environments. It’s part of our gift to everyone.

Our friends who have understood living with disability for all their lives are our mentors here. Offering them All The Respect πŸ™πŸ˜Ž

Sorry it’s been tough for you lately Kevin. Glad you’re here 🩷

#disability #ageing #neurodivergence #respect

@26pglt @Susan60 @cesarpose @autistics
Thank you for your thoughts and good wishes and you are quite right. Together we can help each other and those that follow.

@pathfinder @26pglt @Susan60 @cesarpose @autistics

Hugs to all of this. I'm having similar huge "oh no not me" issues, but then my back tweaks and suddenly I can't walk, and "oh yeah, me."

I will say if there is a time when a cane/walking stick isn't enough, my sibling got themself a Lifeglider and it's fabulous. Upright, no hands, and yet full support rather than the hunched over mess that a walker leaves you with. I'm still hoping that day will never come, but I'm starting to plan for it.

@deirdrebeth @26pglt @Susan60 @cesarpose @autistics
One of the things that you see as a taxi driver is a lot of regular elderly passengers. It's amazing how often you see them stubbornly refusing to use some sort of mobility aid, for reasons and how much of difference it makes to their lives when they finally do. The same is true for things like hearing aids and, to a much lesser extent nowadays, glasses.
Not helping yourself when you can, doesn't really make much sense, when you think about it.

@pathfinder @deirdrebeth @26pglt @cesarpose @autistics

My MIL got quite depressed when diagnosed with macular degeneration a few years back. Refused any aids. Now she has one of those led lamps with a magnifier & is as happy as Larry. (Awful things, I have to shade my eyes, but a huge help to her with reading, puzzles etc.) But she hates her hearing aids! (Mind you, my ears are sensitive..,) I got quite blunt with her - told her when her responses were completely wrong & how it made me reluctant to bother talking to her. She went quiet, then put them in. She always whinged at FIL when he fussed about wearing his years ago.

Life is too short & aids help us to seize the day!

@Susan60 @deirdrebeth @26pglt @cesarpose @autistics
Indeed they do and, in principle, with no more shame than wearing glasses, or needing false teeth.
@Susan60 @pathfinder @deirdrebeth @26pglt @cesarpose @autistics to be fair, you need to adapt to hearing aids, and if she hasn't done that yet, or if her aids just aren't good, it might be quite uncomfortable for her. My grandma gets noise spikes from hers that are quite uncomfortable.

@pathfinder @autistics

Dealing with similar dreams as of late. I find the single biggest issue is that I can't logic or hard work my way out of disability and that leaves me in a panic. I also can't logic or hard work away the current state of the world. It's a brutal feel sometimes. I try to take pleasure in the small things on a daily basis when I can. A cup of coffee. A bumblebee in the sun. Moments with the cat. Sleep still somehow has a way if reminding me of my internal panic though.

@RobotDiver @autistics
It tends to and you're right, disability simply is, it's not a matter for logic or reason.
@pathfinder πŸ«‚ Keep sharing like this. It’s key to survival. Disability is a tough road but you have many travel companions walking it with you. Lean on us whenever you need.
@transience
  ❀️ 
@transience
Thank you, that means a lot.

@pathfinder Feel you so much, and know too well for the bitter pill to swalllow. πŸ«‚

@autistics

@adelinej @autistics
It's hard to recognise the new reality of less. It's not easy and does require some fairly major changes in outlook and expectation. My heart goes out to all of us having to do this, for whatever reason. ❀️
@pathfinder It sucks getting older with so many health issues in top of our neurodivergences. ❀️
@adelinej
Definitely and, of course, there is also no way of knowing how much is a consequence of our neurodivergence and how much isn't.

@pathfinder Kevin, thanks as ever for finding the words for so many of our family ❀️

(That’s an impressive lift imho πŸ˜‰)

@autistics

@jacquiharper @autistics
Thank you πŸ˜€ It's not as if it's something that couldn't happen to anyone. Sometimes it's only a matter of time. Doesn't make it easy though, or not a struggle to accept.
@pathfinder I am also discovering my new norm. After long covid, aging, and other adjustments, I am not who/how I once was or thought I was. I am learning to be ok with this. Sitting out on a beautiful afternoon really does help.
@SecCatHerder
It certainly isn't all bad. Sometimes slowing down, even if forced upon you, allows you to enjoy so much more. πŸ˜€
@pathfinder @autistics
I can really appreciate everything you say here.
I have been struggling with my disabilities being invisible, whilst appearing to those around me to be too young to experience ageing. I've noticed in my sleep I have the sensation of having passed a certain point. Being over the hill but unable to adjust my environment to suit because I can't figure that out as quickly as I am declining.
It sounds like you are working it out for yourself, so I hope you can make the adjustments you need as far as possible.