I don't know how to function with this


(Canada)

I'm 42 and I have struggled so long with this and didn't know what it was. When I was very young ( 3-4) the sensation of water running over my head or hair made me scream, it felt like knives on my skin.


I hated to lie back because I felt so vulnerable. I had a hard time knowing where I was "in space". Tights would make me scream as a child, turtlenecks made me agitated and angry and like I was suffocating.

If I was around people I would become agitated and teary, I couldn't take the lights at school or the crowds, I would grow pale and couldn't concentrate.

Nothing has changed except I don't scream anymore but it is torture. I can't work because of it. The world just seems to be too much for me.
Everyday life is difficult so I stay home a lot, I do introverted type activities which are quiet and soothing. When I am overstimulated I have to sleep. I completely shut down.

I feel so badly for my family.
It seems they have to walk on eggshells and I hate this. I feel completely selfish.
I can't be thrown into a social situation and unexpectedly meeting people I know at a grocery store can spin me.

I can't manage steps well because I have no depth perception and I don't know where to put my feet and I have to think about it first.
I need to hold heavy bags in both hands to walk down a street straight otherwise I veer left and right.

Any change in routine makes me panic and I have meltdowns. It's very hard on my husband and has been on my children. There is a lot I can not do. I have tried. I was told I was anxious and to expose myself to the things I didn't want to do or thought I couldn't do.
I tried that. Nothing is working.

On top of that, I have synesthesia and the days of the week are three dimensional and in colour. If my week is laid out the same way, I can better deal with things. My husbands schedule at work just changed from a mon-fri to an anytime, when he is called schedule.

Not only is the abrupt change hard for me on a personal sensory level but I can't feel where I am in a mental "space" with the way I view the weeks. I had to make a special calendar up to match how my brain sees the week laid out.
This on top of the sensory issues has made me a mess.

I have to opt out of family bbqs. I have to avoid crowds, I have to avoid loud noises. Whistling drives me around the bend like fingers on a chalkboard. I think my husband is embarrassed because he has to make up excuses as to why I am not there.

I just know that too much stimuli will spin me for days and days.

I don't know who can help or how they can help. This hasn't gotten better with age. My four year old shows some signs. She hand flaps like crazy but there is no sign at all of asperger's or autism. She also has to still have a paci. She can't give it up. She is exceptionally bright but can't stand a lot of things either and she expresses this to me. I know exactly how she feels but my husband doesn't understand and says she has to get used to it, it's part of life.
Washing her hair is torturous to her because she completely panics when water goes near her face and I've tried every trick in the book, it's torturous to me too when I wash her hair because when a part of my hand or arm gets water trickling down it I feel agitated and panicky.

I am glad there is a name for this but I feel sort of stuck. what do I do with it? how do I even bring it up to a doctor and should I?
I feel completely high maintenance and so guilty for just how bothered I am by things that so many people do so easily.

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Jul 10, 2010
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our kids
by: Anonymous

Hi Colleen, I had written a long winded post but went over the limit for characters. I just wanted to say that your son is lucky to have you and you will learn how to help him. I'm learning to help myself and my daughter. I still suffer with this but with some newly acquired self awareness, I am learning how to deal with my triggers. this is so so difficult but I'm not giving up.I make notes about my daughter's triggers and what has worked and hasn't worked for her but it seems to change by the day so that is challenging. I'm most worried about her self esteem due to the hand flapping and clucking noise she makes when she does it. I understand the need to have someone to talk to. It does get lonely dealing with it seemingly alone. *hugs*

Jul 09, 2010
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I feel you
by: Colleen

I am currently sitting here crying at my computer. I do not know how you feel, but my 3 year old probably does. He is a smart intelligent boy. He also hand flaps and hops when he is excited. He cannot lie flat on the ground and always needs something under his head. I enrolled him in gymnastics to try to help him, but he cannot and will not attempt a somersault. He cannot stand to have his hands dirty. He doesn't want buttons touching him and is fascinated when someone is actually wearing them. He has had early childhood therapy and does not have autism. I just wish there were more people I could talk to.

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