Just wondering whether anyone relates to any of my experience of my relationship with my own body and its sensory issues, the problems it causes, and knows what if anything can be done about it. Remove the triggers, they say, ...err I can get out of a crowded shop if it's stressing me, however much I desperately want to I can't get out of my own body...
I have twin phobias: all things medical and my body, triggering some damaging meltdowns when faced with bodily sensations or medical environments and procedures. (I have had them in situations other than medical contexts, particularly as a child, and of a much milder, much less frequent nature as an adult). They have been there all my life and are getting worse as I get older. It was the desperate investigation to understand what is happening to me that, after months of searching for an explanation that fits, lead me to the NAS website and the realisation that I may be autistic. I am awaiting assessment, but do think this fits with all the cognitive and social aspects of me as well as the massive sensory issues. We'll see what they have to say, but as a minimum I am satisfied there is a sensory disorder here of some sorts, and if it's not autism, I sure as Hell hope the professionals have some explanation for me that will finally make sense.
I'm amazed I hadn't connected the dots before now, but on stumbling across the descriptor of melt downs, which appear to describe what happens, I scratched my head a bit and for the first time juxtaposed a range of issues with my senses which I have always known were true, but had always attributed to something else. Thinking about this now, I am wondering whether the fact that my body is effectively a lying little toe rag out to deny or mislead me about the information a body is supposed to provide a person with, has been responsible for the development of the fear I have of my body and those who handle it (doctors) all along. Specifically these factors are:
- My mother says I did not want to be hugged as a tiny baby even. I certainly had a childhood wiggling away from physical affection. It always felt like an assault. My touch wasn't telling me it was affection.
- I was late walking (my mother said it was like I was frightened). I was certainly terrified of walking down stairs, shuffling down on my bottom long after my baby brother walked down confidently. I wouldn't play on slides and such because I felt so un safe. As an adult, more that once I've climbed up that steep hill for the reward of a view and suddenly panicked at what is supposed to be the easy part in coming down - so, something in my balance or spatial orientation is sending me danger signals when I'm not in danger.
- I can't hit a ball with a bat or skip on a rope. I don't drive now because I kept hitting objects I thought were somewhere else. I couldn't bare it if that were a person. So, my eyes are telling me stuff is in one place when it is actually in another and/or my body won't tell me where I am in space.
- I have dyslexia and Irlen's. And my vision wants to pick a fight with my touch over whether a computer screen is flat or not. Without my specs with an Irlen tint, my computer looks convex, like an old analogue TV, but my hand will tell me it's flat. Strong sunlight makes things dance.
- I'd concluded the entirety of the British nation were horrendous cooks because everything cooked by my mother, the school dinner ladies, everyone else's mother was VILE beyond words. It felt nasty and smelt nasty and tasted nasty. I survived on fruit and raw veg. The smell of cooked British dinner still makes me nauseous. But I think I've been lied to again. Not every cook in the UK can be that incompetent, surely?
- My basic sense of hunger is also woefully unreliable - I often don't get the cue until I have the shakes from lack of sugar.
- My basic sense of pain is a very dangerous liar! I had a C-section and felt no pain the day after. I couldn't understand why nurses kept wanting to pump me full of heavy duty pain killers, which I refused. Same when I had six teeth extracted - I was in full blown crisis, but pain? Nop! And yet, sometimes there are things that no one should find painful that have me screaming in agony - I'm sick of trying to explain what I'm physically feeling to doctors only for them to keep pressing me for answers I've already given. I'm scared that my body is constantly telling me something is dangerously wrong when it isn't and might withhold the information when it is.
- Two years on from the extractions I'm half way insane from trying to control the disgusting sensations in my mouth. It's the first thing I am aware of when I wake, talking is unpleasant, eating is unpleasant. They tried to give me plates and I was desperate for them to make me feel normal. But I couldn't tolerate the feel of them in my mouth to the extent I vomited.
- In therapy for the phobia, I've been repeatedly asked what I'm feeling physically and I couldn't understand why. It had to be explained to me that there IS supposed to be a relationship between emotion and body sensation - only with respect to anger or fear do I feel anything at all and then it's nigh on impossible to describe. I've been thrown in the waste bin of unco-operative patients for my failure to provide the correct answer..
When I take all that together, the metaphorical lights suddenly go on...of course, I am afraid of my body. Of course, I hate it with a venom. It's lying to me, messing with my head, gaslighting me in fact, and has been for 56 years.
When these things can be fixed by fixing the environment, or leaving the environment - no big issue! I can fix the Irlen's with a tint. But what do you do when the the very feel of your own interior is freaking you out all day, every day and the only relief is in sleep? I can spit out food which feels rancid in my mouth, I can't spit my mouth out of my body.
Has anyone ever experienced and managed to overcome something like this?