I am moved to tears reading your post. I am so sorry you are going through this. I don’t get those kinds of cognitive problems very often, and I hate it when I do, that you are living with all the time. Often enough that I can empathize with you.
And I want you to know that your life is of value! And, I know what it is like to go through doctor after doctor who doesn’t understand or doesn’t find anything wrong (what the heck?). There are so many times I would like to/should have gone to the ER, but I just can’t bear trying to explain “me” to them anymore. I know I’m preaching to the choir here.
I just noticed in your “signature” that you have had TMJ surgery. I think you are the first EDS person I’ve seen have that issue, though supposedly should be common as other joint issues. I had a bilateral sagital split in conjunction with 3 years of braces (not to straighten my teeth, but because of the ever increasing overbite), meaning they broke my jaw down the middle and slid it out 8 mm, back to where it should be. My condials are 1/3+ worn away and the pad/disk? in each joint was displaced. Surgeon was able to put them back in place, though one had a hole in it. He stitched it and put it back in. He thought that would be better than foreign material that my body could reject. Wired shut for 8 weeks to heal, etc. Not sure what all your TMJ surgery entailed? I’m happy to be able to chew again, though I still have to be careful. Sadly the area around the joint never stops hurting, I think because of the scar tissue and muscles around the joint having problems. How is yours doing?
Hang in there.