8:58pm August 28, 2014

Okay my friend explained to me what happened today and now it makes perfect sense.

So I’ve been worried about my father dying.  Then I’ve also been worried about my mother, because her myasthenia gravis/whatever else she has has been getting more severe under the strain of taking care of my father and taking care of all the things he used to do around the house.  My mother has been advised to somehow find help taking care of my father and move closer to a hospital because they’re really afraid for her safety.  Meanwhile there’s a possible fire evacuation where my parents are.

While all this is going on, I got meningitis, then I got a lung infection.  While just barely over the lung infection, I went into the same Interventional Radiology room where I once had a gastrojejunostomy tube placed which basically includes cutting a hole through my abdominal wall into my stomach, while both the local anesthesia and the conscious sedation failed on me and I felt the entire fucking thing.  Every time I have been in that room since, I have panicked badly.  This time I went into that room, I didn’t feel the panic as panic, I felt it as going to sleep, which is one of my most extreme stress responses.  (I used to fall asleep in the same way at the dentist.)  So I didn’t realize how stressed out I was, and I got through the procedure just being sort of entertained by the whole thing.

And then I went home and crashed in a way that I only ever crash when I’ve had some reason (whether real or not) to fear for my existence.  (So, either during intense spiritual crises, or when terrified out of my mind by something PTSDish.  Like having people moving things in and out through a hole that I intimately remember screaming for an entire hour-long operation when they made that hole.)  

I think I’m going to have to come up with some kind of compromise solution for procedures in that room.  I don’t think the doctors at Interventional Radiology fully grasp the enormity of what happened to me my first time in their operating room.  Like, the first time I ever went back in that room after that, I was having full scale panic attacks and flashbacks, and that was for a second highly painful procedure, even though the procedure wasn’t as long or traumatic.  And I don’t think they respect how traumatic the initial procedure was or the effect it had on me.  The nurses seem to get it (when they hear the anesthesia failed on me they’re duly horrified), but the doctors seem to think it wasn’t a big deal, or shouldn’t be a big deal.

But it was a big deal.

And not only that.

I have fucking adrenal insufficiency.

This means that stress is a big deal.  Any stress is a big deal.  Any stress means lowering cortisol means possible adrenal crisis, even if I’m stress dosing, which I did massively today.

Plus, stress doesn’t exactly play well with autoimmune diseases either, like, say, myasthenia gravis?

So you put someone with medical PTSD in the same operating room as the traumatic event, and they have adrenal insufficiency, and they have myasthenia gravis, and you don’t plan to sedate them.

Mind you, they did have a plan in place to possibly sedate me.  But that plan relied on me realizing that I was stressed out and communicating it to them, which… didn’t work, because I didn’t recognize my stress responses in the moment.  I think in the future I should be at least mildly sedated prior to any procedure in that room.  Period.

And I need to talk to my GP about all this because this is serious.  I didn’t used to know why stress made it hard to move or breathe or function at all.  Now I know.  And I’m under so much physical and emotional stress lately that I can barely handle it.  Like… father terminally ill, mother potentially critically ill at any time, grandmother not in great shape, meningitis, aspiration pneumonia, and add a big whopping PTSD trigger.  And then I wonder why my body is responding as if my life is in danger.

I really can’t wait to get hooked up with the local grief support group.  I feel like it would be good to talk to other people who are going through this same sort of stuff, but who aren’t my family or other people who have any expectations of me.  I’m not generally a big support group person, but between therapy and a support group I’d try a support group first, because it’s made up of actual people going through the thing, not just someone who’s been trained about the thing.  And I feel like I need to talk to someone outside the situation, because this has been a hard summer.  And I haven’t even realized how hard it’s been because really hard has become normal to me.

But it’s really hard.  And it’s clearly affecting my health.  I haven’t crashed the way I did today, in a very long time.  It wasn’t just physical, it was this whole physical-emotional-mental nothing-works-anymore shutdown thing.  Which normally I associate with either severely traumatic situations, or spiritual situations where my ego feels as threatened as my body does in a normal traumatic situation.  (If you need an explanation of that one, no explanation will make sense, I’m sorry.  There are spiritual situations that trigger a fear of annihilation that’s worse by many orders of magnitude than the normal fear of death.  They also trigger some of the most massive shutdowns on earth.  I haven’t had that happen in a long time, but today’s shutdown was very similar in type because sufficient PTSD triggers will do similar things to your body.)

Anyway… I’m not in the horrible shutdown phase anymore.  I’m in the phase where I could break down crying at any moment for any reason.  Listening to Donna Williams’s Still Awake didn’t help.  (It’s a song that came into being after… basically there was a woman she wanted to be in a relationship with, and she’d finally realized this, but by the time she was ready to tell her she wanted to be in a relationship, she found out the woman had died suddenly of an aneurysm.  The theme of the song is that we don’t have all the time in the world and shouldn’t act like we do.  I need to contact my parents, and soon, on Skype.  Tonight would be a horrible night to do it, because I’m too frazzled.  But soon, I have to.  And then I have to keep doing it.   Because none of us know how long any of us has, in reality.  And we’re all dealing with life-threatening medical conditions, some of them diagnosed as terminal.  Now is the time to be communicating if ever there was one.  I just really suck at initiating conversations, and I would hate for that to get in the way of being able to communicate with either of them right now.  These are the times I hate being autistic, not that I hate being autistic exactly, but I hate some aspect of being autistic because I know that it’s interfering with everything I want to do.  And being unable to initiate conversations easily, that’s a hard one when every day your loved ones are alive is possibly borrowed time.)

I’m exhausted.

18 notes