I’m in KS (Kansas City area) in the US.

I am some form of severe. Generally I can’t stand more than 5 minutes, or sit up more than about 30, before I hit PEM. When I crash, I usually shut down entirely, and can’t move or communicate.

My last post here, sometime around March maybe, was during my worst crash yet. I thought I was dying because my organs felt like they were shutting down or something.

Since then I have recovered to a new baseline that is much, much worse than before that last big crash. I can do almost nothing. At all. Tasks that require any type of brainpower are almost as draining as those that are physical. I know that one wrong move, one more bad crash, and I will be … not able to even make end of life plans. Which I am going to need to do now while I am still lucid, but … I don’t have the energy now even.

Meanwhile my disability application with social security was denied at the hearing level. Basically, the judge doesn’t believe me, or my doctor.

I had/have legal representation. They were neglectful of my case over the past few years, and completely incompetent during the hearing. I have one more chance to appeal, and they may still not let me. I need to fire my legal reps, and get a new lawyer who is familiar with MECFS and will actually communicate with me and prepare appropriately for any hearings etc.

But there are a hundred steps to that, it feels, and limited time to do it all. I am not confident I am able to adequately manage things like my own finances and deadlines. In fact I am one more bad crash away from seeking medically assisted death in another country. I am giving up and can’t do it anymore.

The disability stuff is just the tip of the iceberg. I need things like help with my food stamps hearing, that’s a fun story, and dealing with my identity being stolen. But the smallest tasks are excruciating.

I wanted to assign a family member power of attorney and just check out of life and truly rest, but none of my family members are able and willing, and neither is my partner. They all have too many responsibilities already. Big things like a new cancer diagnosis and potentially losing a house to the IRS…

Who can I ask for help with any of this? I’m so serious when I say I’m about done and can’t handle being in charge of this anymore.

I’ve been told before things like “find a social worker/organization of some kind,” but like … I don’t have it in me to hunt down someone.

I don’t know what I’m expecting from this post. I’m just totally desperate. Anyway thanks for reading my ramble. Please be kind in comments; I’m on the brink.