Living and Dying

It’s been, I just realized, 4 months plus since I last posted.  I don’t even want to talk about it because it feels pointless to say anything else about it.

In August I got a diagnosis for what has been going on with me for years.  There were all these, “This is hopeful!  Now we know what it is and we can fight it!” speeches.  But I’ve heard those speeches too many times and I tried hard not to invest any hope in this new round.

I wasn’t completely successful.

And as punishment for hoping, of course, treatment didn’t work for me, and in fact, made me significantly sicker.  I tried to tell my doctor this for months, but it wasn’t until December that he finally started to take me seriously, and not until February that he really took me seriously and sat down to seriously rework my treatment.

In February we reset, tried some new drugs, tried some new routines, and this last month my blood test showed great progress in all of the secondary areas of my disease (things not directly impacted by it but ended up a mess secondarily because of my sickness).  But… there was none, or worse progress on the actual disease itself.  So, I somehow got my secondary systems back up and running, but the disease is still progressing.

I’m still dying.  Just more slowly than I was before.

I got those results two weeks ago.

For the first time my doctor actually used the word “dying.”  He’d managed to be euphemistic about the seriousness of my disease before.  That, and arrogant about how well he’d be able to treat it…

But I’m dying.

There’s still another chance.  There’s a very radical medical diet that I’m undergoing now that could reverse what’s happening in my body – in addition to the drugs and other routines already in place.  Well… The new diet and another new drug, and a third one down the road if this plan does any good.

I think I should be more upset about dying.  It seems like most people would react to that news in some way.  But I feel like it’s not really been real to me.  Or… maybe I’ve been so close to death all of my life from suicide, that this doesn’t feel as terrifying.  Or… as things all came to a head today is evidence of… I’m just full on suppressing and avoiding.

I’ve been feeling the ground crumbling under my feet.  I’m not sleeping well.  My routine I had with my medications is a complete shambles and last week I missed more doses than I took.  I took none of them today.

With the new medication that was supposed to be okay for me to take with the other drugs and with my meals… because everyone else does fine with it that way… I can’t do.  I have to take it separately because it already completely screwed up my other meds the first night I took them together and I wound up so wired that I couldn’t get to sleep until 2 A.M.

My meals are ragged.  I managed to not bring food with me to work three times this week.  I eat breakfast and dinner only because it is put in front of me.  I’m not doing my cooking rotations, I’m barely participating when we go shopping.

I’ve lost 12 pounds (incidentally…  the diet is intended to shift some metabolic functions, but side effect is weight loss), which is great.  It should be great.  But it isn’t great.  Because as soon as I start losing weight, my eating disorder, which goes into hibernation when there is absolutely no response in my weight no matter how much or little I eat, suddenly roars back to life when I lose weight and I find myself forced to go into lockdown on my old safety plan for my eating disorder to keep that from getting out of hand… while balancing my macro ratios with a fucking calculator to make sure I have them right, while my body is going through hardcore illness trying to switch metabolic systems to survive on ketone bodies instead of carbohydrate glucose…

And work sucks…  It just sucks hard…

And Sir has practically backed off.  Or it feels that way…  I’ve become so dysfunctional that he’s hardly trying to force me to do anything at all.  It’s like he’s in survival mode with me… he and sub brother keep food in the house that I can eat and put food in front of me and get lunches packed for me, but he forgot to check that I took them with me last week.  He gets my laundry done he gets me clothed, and he mostly spends all of his time and energy just keeping me putting one foot in front of the other… keeping me going to work so I don’t lose my job… getting my bills paid… getting me to doctor’s appointments… and I think he’s running out of energy for anything else, too.

But, more worrying to me is, of course, I am not sure that it’s energy, or if he’s giving up on me.  The times he does push me… to take my pills, to eat, to make a lunch, to eat… to enter my macros, to take my pills… etc. etc. etc.  I push back harder than I ever have.

I’ve never been a wildly compliant submissive.  He asks me to do things that are hard for me (which is why I don’t do them and he HAS to ask me to do them…)  But I’ve always been able to drag myself to it… eventually… sometimes only after physical encouragement, but… I get there.  Because… that’s who we are.  It’s who I am, it’s our relationship, it’s… what we are.

But lately, he pushes and I don’t even move.  Every single suggestion… EVERY single command becomes a battle, and I think we’re both exhausted.  And I don’t even have the energy to fight him, I just want to lie down on the floor and die but he keeps pushing on me and making me get up and making lying on the floor more miserable than getting up until I finally concede…

But tonight… as it started again… I had to get up.  I had to take my pills.  I had to turn off the TV.  I had to…  and I didn’t… and he pushed, and I whined and curled up and refused and it became physical and I lost it.

I shoved him away from me.  I screamed at him.  Literally screamed.  Then curled up on the stairs in the dark and had a full on sobbing tantrum meltdown.

And he backed away from me.

When I fought back, there was just a moment when I registered his face and he looked like… like startled and maybe afraid and now… I think… I’ve broken our relationship.  I broke who we are.  His dominance only survives on his trust in me not to take it as abuse.  If he can’t trust my perception of it, he won’t extend it… He can’t…  He has to be able to trust me that I trust him.  And tonight I feel like I destroyed that.  I feel like I broke the sacred bond and we can’t rebuild it.

He says I didn’t.  He says we’re fine.  He let me cry for a while then still made me do the things I had to do… But now I feel like he’s just doing that to prove to me that we’re still okay, even if we aren’t, because he doesn’t want me to decompensate even further…

And if I keep going on this path I will end up in that horrible reality/non-reality delusion loop where I can’t even tell what is my own thinking and what is reality and what to trust and not trust and believe and not believe so I have to simply believe him because it is the only path to not losing my grip on my sanity.  It sounds dramatic but it’s true… I have bipolar.  It’s true.  So I have to believe him.  Even though I don’t.  And I feel sick inside.

And… my doctor isn’t… Things aren’t good with my doctor.  Aside from him ignoring me saying I was getting sicker for four months… he’s… been inappropriate with me.  He says little… things… jabs… passive aggressive things… he’s dismissive in weird ways, and then last month, he said really inappropriate things to me that have triggered my PTSD and abuse trauma.  He said them several times in our appointment in his office (just him and me in the room).  Then he repeated them the next week when the other doctor was there.  And I looked at her and she didn’t say anything.  And I laughed it off like it was a joke.  But I went to the parking lot afterwards and had a panic attack in my car.

And I didn’t tell anybody.  Because I knew if I told, someone would step in, or pressure me to confront him, or pressure me to find another doctor.  But I feel trapped because he’s the only one in the state who treats the disease I have.  The next closest doctor who would possibly treat me (and is not a pediatrician or a sports injury doctor) is in Montana.  And I know I need to pursue her and see if I can switch to her, if she’s even taking patients, and fly to Montana to see her and try to set that all up…  But right now I can’t even feed myself and the amount of energy it would take to even CALL a stranger, let alone a new doctor, is incomprehensible right now.

I finally told my therapist about his comments and she was furious and horrified and couldn’t even tell me what I should do (because at least she understands how impossible it is for me to face changing doctors right now).  At this point the best solution she has is I don’t go to his office, I do my appointments over the phone and Sir sits with me the whole time…  But still… at my last appointment, my doctor, AGAIN, made dismissive, belittling comments…  And… they weren’t inappropriate in a sexual way like the other times, but… it still made me feel like he was trying to demean me, trying to degrade me, trying to… take me down.  And I don’t know why he is doing that.

And the worst part, maybe, is that I’ve known him for ten years.  I once thought of him as one of the few men I could consider “safe.”  He had flaws, but I considered him a deeply thoughtful and compassionate man and one I could feel safe with alone in a room, at least…  And now I feel I’ve lost that.  That he has changed…  or worse, that this was always who he was and I was fooled – an incredibly dangerous thing for someone with my history to have to believe.  My hyper-vigilance has already been in overdrive having a rapist for a president.  And now my doctor isn’t even safe.  And I have to wonder if he ever was and if I can even trust my own instincts anymore.

And I feel trapped.

I feel trapped because I can’t confront him.  Because that is the antithesis of safe for me.  The only way I’ve ever coped or ever mitigated the danger from men in my life ever… good strategy or bad… it’s the only one I’ve ever had, and still the only thing that stands for me when everything else hits the fan is…  be passive, be non-threatening…  laugh it off like it isn’t a big deal… because if he thinks I’m going to tell someone, if he thinks I’m upset and thus likely to get him in trouble after I leave… then I’m a risk to him and then he might kill me.  And as long as I keep everything low-key, avoid confrontation, make him feel safe, make it no big deal… I have a chance of getting out alive.

I know that isn’t rational.  I know, rationally, that I have a very low risk of being killed by my doctor, or even of being assaulted.  But rationality doesn’t apply here.  This is lizard brain and lizard brain wins the survival vs. rationality battle every time.

I won’t confront my doctor.

I can’t handle finding a new doctor.

Even if I had the perfect doctor lined up, I couldn’t handle asking to transfer my records because… lizard brain sees threat all over that.  And my only other option, just quietly disappear, stop making appointments… just… avoid the whole situation… will literally kill me because… I’m dying.

So I feel like I’m falling apart.  I feel like anxiety and panic and trauma and eating disorder and… I just can’t keep going.  But I’m trapped.  I can’t go forward or back.  I can’t stand still.  I’m on an island surrounded by sharks and the edges keep crumbling away…

I stayed up too late last night.  I only got 5 hours of sleep.  Sir is trying to crack down again (despite my resistance and screaming at him) and set a 9 o’clock bedtime.  But also said I needed to journal (or blog… and I hate journaling so here we are…) and he’s been sitting and reading this with me, and said to keep going… so… a little later bedtime than it should be.  But he’s making me wear my blue-light glasses so I won’t be too damaged by the screen hopefully.

I have to take my night meds (can’t sleep if I don’t) so… that will be my first meds for the day…   I’m supposed to take meds 6 times a day now…  no… 7 times a day.  7 pills in the smallest of any of my 7 doses, that’s my early morning and late night ones.  The rest of the day is… I don’t know how many… a full handful…

But, of course, I’m not actually taking them.

Sir says it’s time to get to bed.  He says to listen to him and trust him.  And all I want in the world for that to be true… that he’s right and I can let go of everything and just trust him…  But I can’t.  Because I’m too sick… and too sick…  if I keep going I’ll get tangled in my thinking again so I’m allowed only to say I’m too sick, but not explain it anymore.

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