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MizLiz
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19 Sep 2010, 2:27 pm

I'm supposed to be the one who can't empathize but its my parents who yell at me and call me a drama queen when I tell them the smell of coffee is making me hallucinate or that people they invite over who don't understand the concept of turn taking in conversation makes me feel like I'm being punched in the face. I want to move out again, but due to non-AS health issues I'm trapped here for several more months. How can I get them to understand? Is there some kind of synesthesia simulator they can look at?

They're really the worst people ever for my health. Even when I grew a brain tumor, I think they thought I was faking,


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Callista
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19 Sep 2010, 4:26 pm

Wow, you've had a brain tumor? Talk about scary.

Are you still seeing doctors re. the brain tumor? Ask them if some wires might've gotten crossed while you were being treated for it, and whether that might be why you have synesthesia. (Whether you've had it your whole life or not is irrelevant. They should know what synesthesia is, and your family obviously isn't listening to you. See if some white coats will intimidate them.) Get the doctors to talk to your family, explain your synesthesia and what it is, and talk about providing you a place where you won't be exposed to the sensations which cause unpleasant or painful synesthesia.

Okay, so after that you're going to want to figure out a way that you and your family can live together without either of you bugging each other too much--for example, ways that your family can still drink their coffee, but you won't be exposed to the smell. For example, they could move your bedroom to a location that's not close to the kitchen, or agree to buy coffee on the way to work, or make coffee after you have left. You could, for example, leave half an hour early, after which they could start up the coffee maker. I'm here assuming your synesthesia causes some rather distressing responses to the smell of coffee--if it were just random colors floating around, it would probably be quite tolerable; but some responses can be quite annoying or even painful. Make sure you are only targeting the responses that are very annoying or painful, rather than the benign ones. This way you and your family have to make the least amount of adjustments.

If they invite people over that you don't like, you can just stay in your room or go somewhere else, and not interact with those people. Should be fairly simple.


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MizLiz
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19 Sep 2010, 8:11 pm

I've had three. My doctors don't understand the synesthesia either. They refuse to acknowledge that it exists or tell me I have "more important things to worry about"

When you're terminal, its called quality of life... as*holes.

My room can't not be near the kitchen. Its a ranch house. I asked about moving the coffee maker into the garage, but no reply. I also have hyperosmia and hyperacusis (brought on by chemo more than autism) so I'd probably still smell it.

I don't like being a prisoner in my own house. I can't even go take a piss because the sound is that overwhelming when I try to open the door to go to the bathroom. I'm going to hunt down the person who invented ranch houses/open floor plans.


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mysassyself
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19 Sep 2010, 9:22 pm

Hi, MizLiz. I'm not sure I have any suggestions as such, but I did a form of chemo last year (for something else, not brain tumor) and it seems to have made my sensitivities much more noticable. I have synaesthesia as well.

It's probably important to try and find a doctor or psychologist who does actually understand and listen to what you're saying. That's important. Sometimes some doctors are a bit ignorant. Just ignore them and try and find a good one.
Maybe you can also try and structure your routines to minimise your exposure to unpleasant sensations and make sure you have things in life that you love, things that are pleasant, almost as if to counteract the unpleasant ones.
Focus does affect sensitivities, so if you have some more positive stuff to focus on, and accept the advent of some unpleasant sensations eg some household noises, they may lessen a bit, just by doing that. :)


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