*Note: I have reached 7 months free of tonic clonics, one month free of the smaller episodes.
On the whole, I'm doing fantastically in that department. *Crossing fingers!)
We all like to think that we can do it all. I enjoy that feeling of accomplishment from not having to say "Help me!" and doing first, asking questions later.
(There are those who say it's easier to apologize than ask for permission, I'd say they're right...too right. I am working very hard to stop that tendency, actually. I'll see how it goes!)
I managed to teach myself a terrible lesson, going by the cues I got from those around me. Well-meaning, but ultimately, fearful- in that I let their voices become part of my internal narrative and shook with fear at nice people who said "Oh, let me help!" (With what? I've only cooked for myself and others about a thousand times!)
Don't take over unless I ask you to.
Teach me something I can do that is useful and keeps me out of trouble.
I learned that those who went nuts insisting that I do things by myself had a point- I'd feel very good.
Then they'd ask who helped me with the project I'd worked so hard on.
Or they'd insist on "helping" me with simple tasks I'm already good at... making tea, filling a coffee pot. Look, if you see me with a 5 gallon jug of water, feel free to help. Except on spectacularly shaky days, a 12 cup carafe is not going to be too much trouble.
I hate the lists- "Ask Josie if she can help you! What do you mean you don't want to borrow milk from Jenny?" and more.
I really detest doing something, being proud, and being asked who helped me.
Or actually asking for help and getting asked why I told the person I asked anything instead of struggling. I hate that far more.
But I have had to come to the conclusion that the last 11 years since my head met a sidewalk, did leave a mark on me:
*My hand control varies. I am nearly out of coffee cups, have gone through about 1/3 of a set of 16 drinking glasses. My white shirts are not so white anymore... I might as well give them a coffee bath or tea-dyeing, or even a tie-dye! And the gross (144) bandages I bought? Gone.
*My AEDs messed up my eye sight so that close work requires both my reading glasses and my contacts.
*I'm ultra thirsty all the time... I also have to keep both saline and fluids in balance.
*I used to make small wooden toys... jelly bean/ gumball machines, a little jigsaw puzzle... without it being tough. I'm hoping to repair a gumball machine I made at 14- clean it up, make a new plug for the hole at top that the candy is poured into. It needs a wide cap with threading for a secure seal. Take care of the signs of being packed away for years. Maybe stain it a pretty, bright color.
*Sewing is something I can do, But I've struggled at cross stitch.
I sometimes do have to acknowledge what I can't do anymore, figure out what I want back, What is feasible?
First and foremost though: I am not a rug to walk on and while being polite-even coldly polite- is fine, I need to say, without guilt, "Look, you can't do this."
I'm attempting with everything not to apologize... make it mean something, like when I say no, another word I struggled with (the opposite way) So far I'm still awkwardly replacing it with "Suck it" in conversations with friends.
But, I'm absorbing a few nutrients now. I've got a lot of fish to fry, as it were... projects, the need for escape.
I also have to stand up for me. No more letting myself be dragged, to have my happy moods changed into something else. No more letting people talk over me. It's upsetting and embarrassing, and I will have my say!
I will quit doing my malfunctioning robot: Intend something else, short circuit, head swivels around by a thread, sparks shoot out and I'm guaranteed to say something that, if not intentionally so, strikes people wrong, but can also be the words I've thought about saying while people shouted over me and told me that I had to speak this way, no that, and couldn't use my hands, (Impossible), insisted I translate all conversations with deaf people (Uh, no. That's private.) And sometimes it gets unleashed on the wrong person. Or it's entirely innocent and yet... phrased very badly. That's among my many tasks.