It’s Always Been Like This.

Picture of me, the author. Image captures just below my eyes to show a clear plastic medical equipment mask, fogged up, connected to a clear plastic canister- also fogged up. I'm wearing earpods and a pale pastel purple track jacket. In the background is a curtain, a white tiled wall, a hanging wire "shower caddy". None of my facial features are visible except for my light skin.

What is this a picture of?

Picture of me, the author.  Image captures just below my eyes to  show a clear plastic medical equipment mask, fogged up, connected to a clear plastic canister- also fogged up. I'm wearing earpods and a pale pastel purple track jacket. In the background is a curtain, a white tiled wall, a hanging wire "shower caddy". None of my facial features are visible except for my light skin.

Me checking the level in my nebulizer.

I have to do it in the shower with the curtain closed and there’s a whole fucking process to it afterward, because the point of a nebulizer… is to nebulize shit. Meaning make it breathable.

But there are germs that get nebulized too in the process. So after I sit in the shower listening to a fucking generator mist up some shit for me to breathe, I then have to bleach down the shower space and curtain and scald everything with the hottest possible water.

It’s probably not enough.

And while I’ve used a nebulizer before, I’m in this particular position- every night before bed now- because our medical system is fucking trash. Our “social systems” (of oppression and abuse) are fucking trash.

So, while things could be worse, it would be great if I was not stuck directing my own care in consultation with a geriatric MSN on the east coast to try to combat the beginning of O2 level decrease, headaches, other shit.

It would be nice if I had a doctor or could see or talk to one without ending up in a trauma-induced suicidal spiral.

But mostly I can’t. I keep trying, but most of the time i would literally rather die than be dragged through this repeated bullshit where trauma that has been repeatedly inflicted on me is then said to be my fault.

That when I stop seeking care because the interactions are so fucking painful and a threat to my life in themselves it is seen as evidence that I’m actually “fine”, and I’m probably “just attention seeking”.

That when I’m able to sit there with a migraine or a kidney infection or pressure and pain in my chest and describe that to you- I’m told I am lying.

The way I communicate is inherent. How I stay stoic in the face of extreme pain, discomfort or the unknown is a means of survival that has developed through years and years of being put through abuse, neglect, unnecessary pain.

Yes medical staff are great in that they can save and improve so many lives.

The reality for me is that so many simply choose not to when it gets complicated. When it’s the “less than” and more vulnerable people who should be the number one priority.

And that’s why I sit in a fucking shower.

BONUS CONTENT:

I wrote this last night but all day I’ve noticed my seizure threshold is very noticeably lower. It’s another thing that I had been able to manage enough with the meds I had- I haven’t really had a seizure for such a long time, and the last time I did it was probably in my sleep. Again, if I had a fucking doctor to talk to about this I would. If it was easy and not incredibly harmful to have a steady neurologist, I’d have one.

It isn’t, so I don’t.

Just a fucking update on the bullshit that’s ALWAYS there.

04/17/2020

My OCD wants me dead and it’s probably not what you think. It’s really making me so terrified of dealing with shitty doctors that I’d rather die than go to the hospital. I had a StrongDiscussion with a doctor at urgent care who was quite decent, except that she gave her colleagues WAY to much credit in assuming that I wouldn’t be put though a traumatic shit fest just trying to be seen at the ER.

Those are the same doctors who made it impossible to get care.

So now I’m back at home. And this is how it’s always fucking been.

Update to the update: I really don’t understand what is going on but the “lots of weird neurological stuff” has now officially and very clearly invited my previously well managed TLE to join the party.

This is so much bullshit.

-took this part out because it was more than I wanted to share YAY-

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