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I hate waking up like this…

it happens to me all the time, I am used to it, but I hate it.

I wake up into a new world.

Then I have to figure out how to function in that world.

And sometimes that works out.

And sometimes it really doesn’t.

Laura keeps saying she never realized until living with me this long, how much difficulty I have in certain areas.

Mostly eyesight, time, and memory.

It is like things are just blank where they should not be blank. Probably seizures or something related to the epilepsy even if it isn’t directly seizures.

And I get really confused, disoriented, and insecure.

Insecure like a terror that I did something wrong in the blank spot I don’t remember.

And sometimes I have.

Today I need to eat and I can’t remember something about how.

This is normal.

But for now there is nobody to ask because of other things going on in life.

So i am just waiting, and scared, and there’s stuff I don’t understand.

All of this it happens all the time.

I do hide some things about my disabilities sometimes and that includes, well… especially, I hide eyesight issues and certain cognitive issues. So I pass as far more sighted than I actually am. And I do not know how well I pass cognitively but I know that I at least try to hide how disoriented I get and the full extent of my memory and time confusion.

So what I end up doing in these circumstances.

I do what I know how to do and then just wait for things to work, if I can’t find anyone.

This is NOT a request for help or attempts at help, those things make it worse and make me not ever want to write about this. And today I just can’t deal with explaining.

Anyway this is just to talk about the fact that this goes on. So people know what it is like, and that it happens, and things like that.

So like today, I will do any of a number of things. Like I did some washing up around the house earlier and some crochet, and am about to do meds. I just can’t at the moment figure out a few things that are crucial to eating. And I can’t ask for help. So I just have to wait until all the time and abilities and people come together — and they will — and eventually I will eat. This is not ideal. It is what happens though, when there just is not the resources to do things right. It used to be I really did get help in areas I didn’t have the skills for, by people trained and paid to do it. Right now it is all falling on two shoulders, mine and someone with an autoimmune disease, and that just is not how it should be working.

But the waking up disoriented and missing huge amounts of information about the world is almost a daily occurrence, sometimes even more than daily.


Hufflepuff. Came from the redwoods, which tell me who I am and where I belong in the world. I relate to objects as if they are alive, but as things with identities and properties all of their own, not as something human-like. Culturally I'm from a California Okie background. Crochet or otherwise create constantly, write poetry and paint when I can. Proud member of the developmental disability self-advocacy movement. I care a lot more about being a human being than I care about what categories I fit into.

One thought on “I hate waking up like this…

  1. That’s a great explanation of this feeling. I struggle with a similar thing myself. There were 5 days in a row I couldn’t go get groceries because my mind couldn’t retrieve the data that says “shoes have to happen before you can leave the house”. I just kept standing there with pants and a shirt on…. waiting…. waiting…. straining. Before finally just going back to bed.

    I’m frustrated as hell that people don’t get it and I’m terrified that they eventually WILL get it enough and then take it upon themselves to control my whole life with their ideas about what I should or shouldn’t do. For example, I can drive a car MOST days because there are many rules to driving a car – everything moves in a very consistent way and is predictable. Go when it’s green. Stop if something is moving perpendicularly across my life of vision. I don’t drive when I don’t feel well enough to.

    Ableds don’t get that disability can fluxuate so much from day to day or moment to moment and only we are capable of knowing what we can do. Their ignorance threatens my life on a regular basis.

    I found your blog through twitter – thanks for this post – very relevant and I feel less alone than I did before reading it!


    ps – my website contains content that can be triggering, harsh language, ect. Only check it out if you feel safe doing so. Not much there to look at the moment but it’s coming.


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