Sometimes I wish My Autism Were a Terminal Disease

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The physical illnesses can certainly cause exahustion by themselves. Then you add doctors, hospitals which involve quite a bit of social interaction and sensory overstimulation (noise, people poking and sticking things in you) add to your physical and mental exhaustion. My advice is to deal with it the autistic way, hyper-focus on interest, stimming and so on.

just when you feel safe.........i recognise that, just when you're forgetting to be depressed some thing comes out to hit you back in there with great force,
should one only exist under the cover of depressed?
some take all the blame, or guilt, when even unable to throw it back
...then you know that if stones were thrown they would go your way,
same as it ever was, shame on the world, or is it shame on you for being in the same play again?
how many times before it will pass?

(and i'm not even depressed according to the rules,
at some point you can't deny that the whole world and everything in it is a lie)

but i'd compare it to the watermill & the water, as water stands (tarotwise and more) for feelings/emotions, thus these tend to flow downward, to the lowest denominator, point of stagnation
but water can give energy if used, for transport already since ever, for energy in several ways but is almost forbidden now
the mental watermill, turning, turning up & down reflecting the cyclic return of everything


the house is the head? sometimes you have to make your own fun

I don't know, many times I fantasize about needing to be hospitalized again. I think I'd feel safer in the hospital than at home. Yes there are noise issues at the hospital, but they don't seem as bad as the stuff I have to deal with at home on a daily basis. And then yesterday, ugh... Not even the 4th yet and there were already fireworks loud enough it was like they were right in my backyard. Chances are I'll have to deal with more of it before the weekend/holiday is over. I just managed to unfreeze long enough to grab my earplugs and I felt like I was inches away from a meltdown and banging my head against the wall and the earplugs really only slightly muffled it. Was also pissed off in general that I couldn't watch my show until the thing was over. Anyway, at least at the hospital I'd get all of my meals prepared for me and brought to my room, and meal preparation is something I really struggle with. I also wouldn't have to worry about expending energy on any chores. Sometimes I just really feel like I need my own personal staff to take care of me, but since I'm not rich, that's not happening.

As for dealing with things the Autistic way I think hyper-focus on interests and stimming does me more harm than good. I stim with food a lot so I've gained a ton of weight, and I'm starting to become paranoid about diabetes. Unfortunately I haven't found anything that could effectively replace food. The thought of chew toys disgusts me because I don't want something that tastes like plastic/silicone. Taste is a big part of it for me.

If I actually have a passionate interest that I can hyper-focus on, then I'm more likely to get inadequate sleep, and then I just do it so much that I completely burn out and can't do it anymore because I'm exhausted and it feels more like a job than fun. The last time I had a special interest, I think it actually caused me a great deal of stress alongside the enjoyment I was getting from it because there was the feeling like I had to do everything related to that interest. I still do have that interest, but just not on the level it once was. Right now I have no interests that I'm really passionate about and I can't force myself to feel that way about any interests. I just have normal stuff I do to try to pass the time that I don't even particularly enjoy all that much. Perhaps another special interest will come along when I least expect it, but I'm kind of dreading that happening because I'm afraid that if I ever get that passionate about something again, that I'll end up completely collapsing from exhaustion.

I appreciate the discussion here, as someone with chronic fatigue and autoimmune issues stemming from Lyme disease. My mom has fibromyalgia too, and while not a lot is known about the condition, there is some suspicion that it can be brought on and exacerbated by stress.

It is my opinion (and simply 'my opinion') - that autism can cause stress - and stress can exacerbate fibromyalgia. Personally, I think autism, fibromyalgia, autoimmune disorders, and chronic fatigue are all linked to an underlying neurological sensitivity, that makes us prone to all sorts of problems.

In a world that doesn't have a definitive answer to this question, this is the answer that makes the most sense to me personally. But I'm not claiming it's the only cause of these conditions, because it's a complex issue, that is not fully understood, even by medical professionals.

An eating stim is not good so a more physical exercise type stim would be better. I did not know your home was worse than the hospital. Have you tried a white noise machine?
White Noise - Mirriam-Webster Dictionary.

I actually did read an article somewhere that said there might be a possible link between fibromyalgia and autism, so there may be something to that. I think it can also be brought on by severe illness or injury(both of which could cause a great deal of stress). I think it was brought in my case by a rather severe bout of Fifth's Disease in my mid teens. It left me almost completely bedridden for some time and I missed about a month of school and still wasn't fully recovered when I went back. It was after that when I started noticing various symptoms of chronic illness creeping in, but it took years to get to the point where it was really debilitating.




Unfortunately with my chronic illness I really can't tolerate much exercise. I've tried physical therapy a few times, but they usually push me too hard and then they end up making me worse. It's like for normal people the more they exercise the more tolerance they build up, but for me the opposite happens. The more I do it the less tolerance I have. I remember once working up to half an hour of cardio several years ago, and even though my muscles learned to tolerate that much exercise in the moment, I'd go home and crash and not be able to do anything for the rest of the day and sometimes not the next day either. In any case, even if I could tolerate exercise it wouldn't be a replacement for food stimming because eating is a pleasurable sensory activity and exercise is not.

White noise actually hurts, especially at the volume I'd need to drown out the bad sounds. I've tried rain sounds and even music, but again I can't tolerate the volume needed to drown out the bad sounds. I've even tried noise isolating ear buds. They made it so I couldn't hear the phone ringing next to me, but somehow trigger sounds coming from the other side of the house would still get through.

I had Fifth Disease when I was 10 - it was very mild, but come to think of it, my health started deteriorating from that point. (I also had a mysterious but severe meningitis-type illness that same year, which is what I've always suspected was the start of my chronic health problems.)

Anyway, sorry you're dealing with such complicated issues. I've struggled with an eating disorder since age three, so I can sympathize with that as well. (They say eating disorders are common among female autistics - but others say 'female autism' is a myth, so who knows!)

Terminal illness isn't all it's cracked up to be.
You don't die soon enough, and there's often a lot of suffering and medical intrusion along the way.
You have to put up with a lot of scare tactics, dumb doctors, patronising people and fake sympathy.
You'll be told about all the snake oil cures out there and how you just have to "do this and you'll be cured!!"
There's also the uncertainty of not quite knowing if you will die or not.
Autism is better, IMO.

Absolutely Raleigh, and I think it needs to be acknowledged that the topic of this thread is potentially very hurtful to people on this forum who actually are struggling with a terminal illness. I apologize if anything I've said has been insensitive to those who are dealing with much more severe problems.

Be well everyone.

We have not heard from Will@rd the OP. That concerns me.

I'm sorry you feel that way.

I hope he's all right too. And apologize if I went off-topic too much in this post, and said things that were unhelpful. I have trouble judging what's appropriate to say.