This was written long hand in pen at six o'clock this morning. I have thought hard about whether to type it up and share it, without any editing because of the nature of that writing. OK, so I admit one edit because the original was just planted onto the page in one long paragraph so I've separated things out to make it more readable. This writing is part of a course I'm starting on unlocking creativity, a course that will be wonderful. But the pages of writing every morning - yes, EVERY morning there's this amount of writing, in pen, on paper - aren't really meant to be shared. Today I am breaking that rule. Because this may explain part of my life to people who can't see it because it's not visible. Here I share a little of what sensory overload can mean to me. The effects of doing something I wanted to do - and to be able to do. It is very nice to be able to admit to all this and to be honest with myself and others. It is horrendous that my unconscious coping techniques and defences took a running leap off the nearest cliff when I started to examine them and bring them to light. Right now, things are fucking difficult. I'd say "Excuse my language," but really, don't. I can't be British and polite and stiff upper lip about this without being dishonest about the whole thing. And if I'm dishonest about it then what really is the point of me talking about it at all. Here goes:
There are moments when I wish autism could go and take a flying fuck out of my life. Last night. And this morning. Moments when it would be nice to be able to do normal things, the simple things that normal people do, without it turning into a living hell, without having to retreat and recover until hell subsides.
Yesterday I spent time with people. Unexpected people. For maybe 45 minutes in a noisy bar. Thankfully not the first bar we entered which was too much for me in seconds. I try to act normal for the randomly met people. But it's so hard when everything else is happening, when every second is an inner pain and every moment an overload of sensory input. I try so hard but it is hell. And I just don't know the social rules. Didn't really know how to function and that would have been the case even if we have all been on a deserted mountain with only the sound of the breeze through the rocks and the heather to keep us company.
Perhaps I should have said no, and not done it. But damn this. I want to be able to function in a reasonably normal way. I know I wasn't. I know I was finding communication tough. Drifting into a mode where every word is forced and where being non-verbal is the option I want to take. It was nice to be with a very verbal person so I didn't feel an excess of pressure to talk, just guilt for not talking enough and drifting into stimming with the sleeves of my top in order to stay relatively centred.
Yes. I want to be with people. But I need to learn to say no. To be totally honest and say “I am autistic. I choose not to do this because it is harmful to me.” “I am autistic, and while this may be normal life for you, it is misery for me.” For my own well being I need to learn this.
Because it wasn't just that the situation hurt all the time. It continues. The bar is left behind. The noise, in the past. The people left. But that's not the end of it. My hell does not end the moment the situation ends. It takes me time to recover.
Last night was a quest to recover. Yes, there were good things. K's enthusiasm over stones. The blessing of a double rainbow. Writing to a friend. But the evening was recovery, still feeling the physical pain of sensory overload. Still in a state of shock, in a state where the terror and craziness and over-whelming chaos of that bar stayed with me. Every second, no matter how distracted, was a continuation of my pain. Just as a tuning fork takes time for the note to fade.
And last night I didn't see any sign of the note fading. I was in tears more than once because I still hurt so much. And because I know that there is nobody who can really help. Nothing I know that helps. As such times there is always the temptation to self harm because I know that would instantly relieve much of the stress, anxiety that can accompany the effects of overload. But self harm is out. I refuse it and don't ever want to walk down that path again.
Yes. There were good things last night and I hold onto those. But they were fleeting flowers in the fire.
I am fortunate to be taking medication. Because it does make falling asleep easy, no matter what state my head is in. The drug takes me gently away rather than it taking hours to sleep, until total exhaustion means sleep comes. Without that drug, last night would have been worse, have gone on for far longer and the pain would have been with me at every second of it.
So what of this morning? Am I recovered? Simple answer: No. I am not.
I do feel better than last night but the noise and the difficulties of the social area still with me. The noise is still humming through my head. Repeatedly the sounds clamour for my attention even though they ceased to exist in the existence of my outer world, fourteen hours ago. In my inner world they remain, in full surround sound. So glad we were near a window. It means that if I focus to the left of my brain it is a lot quieter.
No. I am not recovered. And I hate that. Fourteen hours and I am not recovered from doing a perfectly ordinary things that perfectly ordinary people do. Fourteen hours and my non-recovery makes me want to cry again for this shitty, shitty life. No. It's not shitty. This is only one side of it. There are many good things and my life is better than I'd ever thought it could be.
But to wake up still wounded from something so simple is scary. It's distressing. It's a picture of how limited I still am. And of how limited I might always be. And I have no been able to accept these limitations. I try not to punish myself for them but that's difficult. And I try not to get frustrated knowing there are normal things I can't do.
Get this through your head Clare: You are disabled. Deal with it. Accept it. And seek a life that sets you free in it.
Waking up like this isdistressing. When pain continues so long after the cause has ceased to exist. Irrationality rises up and says, “Snap out of it. It's just in your head.” Yes, of course it's just in my head. But that doesn't mean it isn't real.
I am so glad to have accepted this autism label – because at least it explains my reality. At least it tells me I'm not just a useless nutter at these times.
So today. I must continue to recover. And then go to church and be the social animal again, the smiling face welcoming everyone, the friend to everyone there. I so much want to be there, with my family who are the church. And I hope to recover enough by then so that I can be back in that quiet place beforehand.
Today is the day when I must start to learn to say no. To not worry if that makes me look selfish or anti-social. Today is the day when I must start to put my own self-care first so that I can care for others from there and not fail to care from my own hell.
I am autistic. It's time to say it. To BE autistic and explain that when I know something will do me harm. Today. Say No. Because the reason is sound.