TW: suicidal ideation, brain wonky things spoons low beware
I had a no people half day, yesterday. It didn’t help – apparently no people day means ‘everyone message at once’ and I’m very tempted to flat out block people who only contact me once every six months and apparently plan it at the exact time I do not want.
I basically put my foot down the other week with the psychiatrist. He wants to send me off to this doctor and that doctor and this specialist. He’d just come back from leave, and had no idea what I was actually up to or anything that happened, and didn’t read the notes I took in saying that. It was a waste of an appointment, essentially, because nothing got done. But I did manage to stop the incessant, endless appointments. Fighting the IUD left me with no energy, and I’m sick of not being treated like a person.
Also, it’s been obvious for a year now that I need to get into a pain clinic. He said, last September, that he would refer me off to one. The gynaecologist, after telling me that physio would fix my brain so I would magically love having IUD-induced anxiety, and telling the psychiatrist that the IUD would fix the ten weeks of bleeding that it was there to manage (even though until then I had not had any for five years and I was literally at the point where if it did not stop I would kill myself), told him she would refer me to, guess what, a pain clinic. But one that only deals with one kind of pain.
I do not trust anyone she sends me to. Until then, though, I was under the impression that I’d been referred off last year, and I was just, you know, on a waiting list. Apparently, I’m not. And the psychiatrist wants me to go to this other person because it’s faster – never mind that I can’t get there because there are no trains to that part of the city – than waiting two years on a waiting list I was meant to be on a year ago.
“But you trusted her to operate on you!” is his excuse for all this, never mind how that actually went down and how I tried to, you know, stop it.
Amid all of this we have the neurologist. The neurologist is responsible for getting me to the psychiatrist, but I only got that far because I was on a waiting list for him for five years, i.e. for an issue which predates this one. (Or not – I’ve had this since I was eight, at least; it’s just more obvious now. But I wasn’t referred for it, so.)
The neurologist, when I finally got to see him, very obviously shut off when it came up that I had work stress. His entire body changed. He won’t give me a copy of my MRI results, either, probably because I’ll be able to point to them and show that my brain has, indeed, changed since the last one, and have a weapon to fight with (I know this because I saw it over the psychiatrist’s shoulder, but without it on paper I can’t, you know, prove it). The only option he gave me was Botox, because nothing else is “real”. Apparently, the part where the right side of my body gets weak and clumsy after short intense pain on the side of my head is “stress”. He also won’t let me type to him, because it “makes him feel small”. I did try Botox, but it made my back pain significantly worse – I still can’t shower or lean on anything without feeling static electricity run up to the base of my neck. I was unable to vocalise at all for a month after, because my face wouldn’t move.
I was not one of the 50% of people who have no side effects.
In the appointment, he wouldn’t let me type to him, either. He had me sit, unsupported, on a bed, and he came up behind me and started poking me. I jumped, because, you know a man crept up behind me and was touching me and hadn’t let me know he was there. He had somehow managed to get back in the room and come up behind me without me seeing him.
“It’s not a needle! It’s just me,” he said. The damage was done, though.
He kept scheduling appointments for me to “follow up”. They were always at the same time as speech therapy. To move them, I had to go into the hospital with a note and be told I should just cancel speech therapy. That is the only time he sees current patients. One admin made an earlier time for me and he went off at her and cancelled it.
I tried to call them with the relay to change the new time, and had two days of the relay operators texting me to yell at me for not texting them back. Apparently, this was due to an outage, and they kept receiving my message “no thank you end the call” and opening a new call just to send me abusive text messages for not responding to provide a number and message and then not responding. I haven’t been able to use the relay since; I freeze up and start crying. I am crying now just typing about it.
I ended up lodging a complaint with the hospital, and sending a separate letter to the clinic admin to cancel the appointment, because I wasn’t able to get there. I got a letter back which said “YOU DID NOT ATTEND YOUR APPOINTMENT BECAUSE YOU DID NOT ATTEND YOU HAVE TO CALL US OR WE WILL TAKE YOU OFF OUR CLIENT LIST.”
My psychiatrist agreed with me, at the time, that I shouldn’t jeopardise speech therapy. (At the time, he had somehow formed the impression that I only had to deal with one person in my lessons, not in a school, and when he worked out that I had to deal with a receptionist and other students and other teachers, he put the idea of quitting in my head; as you know, this has caused a lot of heartache.) He had his receptionist call the neurologist’s receptionist – I was offered a new Botox appointment. Botox for migraines is meant to be every three months – at this point, it had been eight. Clearly, that didn’t make sense. The psychiatrist sent a letter instead, requesting a consultation, and asking that I be notified by letter. He included my address, which had just changed. (Did I tell y’all about that? Some lady started taking my mail at the post office and when I tried to stop her the post office staff took my mail away and said they wouldn’t give it to me unless they could call my parents. And let the other lady take more of my mail. While I was screaming and shaking my head and physically trying to stop her without touching her. My mum said it was my fault and that I was being stupid.)
I have not received a letter. Instead, I checked my phone before bed, because I suck at no people days, and I had a message. “YOU HAVE AN APPOINTMENT ON [DATE] SMS Y TO CONFIRM PLS ARRIVE 5 MINS EARLY”.
I cried myself to sleep, unable to breathe because I was so scared. And pissed, because I don’t know where I’m meant to go, I don’t have a letter to show to say I have an appointment and I can’t risk my phone being taken from me again.
In case I was being irrational, I found my mum on Skype and asked her what she thought. Instead of being, you know, thoughtful, she gave me the third degree. “Does it give a time?” “Do you know what the appointment is for?” “Have you been to him before?” “Do you know why you need to see him?” “You had a scan a while ago have you seen him since then?” “Can you remember why the psychiatrist wanted you to go back to him?”
I snapped at her. The content of my appointments is none of her business, really. She just wants to know, because I am not entitled to privacy, at all.
“The problem is that it is a week’s notice, I do not know where, and I am not being treated like a person.”
She just changed the subject. Thanks, Mum. No, really.
(My parents are part of the problem, not the solution. That is an issue for another time.)
Again, I don’t know what to do. I can just not go, not confirm, because they did not send me a letter, and on a week’s notice I can’t arrange anyone to come with me, not that I would ask my mum, who is the only person who could. In theory. I was open with the psychiatrist about needing a break. I can even pretend to not have received the message; just block everything for a while. I can guess where it is from Google, maybe, but I would still have to, you know, miss speech therapy (and I would have to pay for missing speech therapy, and be harassed about it, and I would be upset, and cry a lot, and), and if I got it wrong I would be in trouble. If I don’t go, there’s a chance I will have to pay a cancellation fee, which I can’t afford; I don’t even know if there is a fee, which I can’t afford. After the Botox, which I was told was covered by Medicare, I received a bill, so it’s not like I can trust them if they do say it is Medicare.
The fact is, though, that the concept of having an appointment with him, where he has already shown disrespect for my time and ability by not sending me a letter with the place and fee and time with enough notice to arrange a support person, when he treated me so terribly before (you don’t creep up behind someone and laugh at them when they are startled). I can feel him touching me. I haven’t stopped crying since I woke up, and before I went to bed I was disjointed and unable to focus; I stumbled to my bed, tried to read because my eyes were too sore for anything else, and couldn’t understand what I was reading even more than normal (normally it’s hard, but I can flip back and forth and reread things a thousand times and make it work, and I don’t read dense worldbuildy things anymore).
Maybe I need to see him. Maybe I’m right, and the little voice in the back of my head pushing for me to fight hard enough to get MS ruled out is right, and when the psychiatrist (it took me twelve tries to make that look right) said “but you’ve been seen by a neurologist, if it was anything he would have seen it” he was just trying to be reassuring and loyal to someone he works with a lot.
But it’s not good for me to see him. Just a text message from his office, wherever it is, has made me cry for hours, which means I’m going to be throwing up later, that my head will hurt more, which is possible even though even ice isn’t working and my temperature is elevated. I am shaking and rocking, and all the good from turning off the computer and having a Twilight knit-in is gone. Arguably, I’m worse now than I was before, when I told myself I needed that. This isn’t a good thing.
My psychiatrist is big on the “you have to do things that make you feel uncomfortable because that’s how you get better and learn that they’re okay!”
I tried to explain to him that it’s the other way around – that I need to be able to take these feelings and understand that they are a warning sign that this is not good for me, and trust that, act on that, without being punished for it. The core reason I have this thing, that makes the other thing present in the way it is, is because I spent eighteen months being told that every time I complained that something wasn’t normal and it wasn’t something I could fix by myself, it was my fault, that I wasn’t good enough, that I was just making it up. Even when they realised how bad and dangerous things really were, it was my job to fix it, with no support, no backup. And then, they told me that while I still had to deal with all that, what I needed was to be around a man who’d spent all that time telling me I wasn’t doing my religion right and felt it was appropriate to call to me by whistling as one calls a dog. I had to apologise to everyone for having a panic attack because it was disruptive. I was told off for having a panic attack because it’s not a big deal. I was told I should let her touch me and tell me what to eat and follow me into the toilet because “it’s important I emailed you two seconds ago why haven’t you done it yet” I was throwing up because you ate a ham and cheese croissant in order to make yourself sick enough to get out of work, because I was told that I had to stay. Over and over.
But if I listen to my instincts here, the way my brain is choosing to tell me that this is not safe remember what he did to you, he doesn’t listen you can’t make him listen, you need to save your spoons, I get punished – I am denied medical treatment, I have to pay to be denied medical treatment, and I get yelled at by the psychiatrist even if he lets me explain. If I ignore my instincts, this gets worse. I get auditory flashbacks. I dissociate. I lose progress I’ve made on making a regular sleep schedule and eating and taking meds and being functional – things I can’t afford right now. If I continue to be punished for listening to my emotions and my instincts and my body, then they’re not going to see anything they call “progress”, because it’s perpetuating the cycle that brought me here. My instincts are saying that he is not the right neurologist for me. I have to respect that, because I’m the only one who can make informed decisions about my health care. But I will be punished for making that decision, and it will not be progress; it will reinforce the existing pattern, and I can’t just tell my brain that it’s different, because it’s not. It’s still other people telling me that my opinions and what I feel is best for me is not valid.
“That’s the trigger. That’s a bit awkward,” the psychiatrist said. That’s a bit useless, isn’t it?
Same with speech therapy. If I go, I get harassed. I don’t feel safe quitting, because there are consequences. If I go, there are consequences. I can’t make a decision on that because my instincts and feelings are being ignored, on both sides. Neither option is empowering. If I don’t go, though, it feels like my soul is being ripped out through my mouth, and so I have to make everything else easier, calmer, so I can get through attending and feeling objectified and threatened. I used to avoid going near there, because I used to have to go there a lot and there were very good odds of running into someone who was very bad for me in ways that I can’t describe in public. I have to deal with that every week now. I have to put up with people ignoring me and talking over my head, the same way they did at dance, because someone decided that not talking meant not being included. It’s not. They were talking about the differences in guitar strings, the other day. I have opinions, but when one of the people involved in the conversation was happy to chat with me on Facebook and then walked into the building, obviously ignoring me and abruptly ending the conversation, only to pick it up hours later, pretending it had never happened…
“He knows the situation; he’s just trying to be nice,” apparently. Nice is signing ‘hello’ back instead of greeting everyone but me. For a moment I doubted myself – it mustn’t have really been him, right? But it was.
I dissociate in order to attend. They think it’s progress. Instead I deliberately put myself back into survival mode – do whatever it takes to not be bad, so they don’t have to yell at me. They encourage it because it makes me better. I’ve been in that situation before; it doesn’t end well.
But if I don’t go, I have nothing of my own. I will have no friends. (I just blocked half my Facebook list because it’s not actually a coincidence that everyone messages me as soon as they change their status to ‘single’ and I cannot have another ‘I can’t have sex with you because you’re asexual and that feels like rape and I am not a rapist’ conversation). Not that they’re friends, but it’s a nice fiction. It feels worse not to go than to go.
That said, my parents are coming to visit, and I’m taking a week off. My parents will be angry and threaten to kick me out because I’m not meant to interrupt my life when they come to visit despite the fact that having them sleep in front of my television cuts me off from my coping mechanism, that I end up drained and exhausted and in pain from having to cook because otherwise my mum complains she never gets a break, that I end up losing dishes and sometimes entire appliances to cross-contamination and then I get yelled at because “what happened I don’t understaaaaaaaaaaaand” when I throw it out. Apparently, me not being able to talk makes it really hard for them and it’s my fault they can’t cope with their kid having a brain disorder. Or something. But I have that to deal with too.
So I cannot do this. I do not have enough spoons, I won’t be able to self care, and if I am anything less than perfect, because my parents refuse to learn any kind of sign because they’re too old to learn new things, I will be punished and criticised and told off, and I cannot, literally, cope with everything.
So, since the neurologist can’t do anything as simple as telling me where the appointment is, and I do not feel safe going to him, nor do I feel it’s the right match for me, I won’t go. I will not confirm the appointment. I do not wish to reschedule.
I will skip one week of speech therapy, tell my parents that if they don’t like it they can stay in a hotel like I asked them to and they refuse to do because it’s too hard/expensive/they won’t see me/whatever the hell their problem is, and if they kick me out then I’m homeless and disabled and eligible for emergency housing
and if I don’t get it then I’ll just kill myself and save everyone the trouble of dealing with me. I will take in two weeks payment next week and make sure they can’t harass me for it. This means I get no time to myself while my parents are here , and that’s okay, because if they get too much, again, I’ll just kill myself and save them the trouble of dealing with me, which is not ideal but it’s better than having my dad go “what are they teaching you it has to be classical you can only train classical” and leaving them unattended to “help” by screwing up my kitchen with food that makes me sick. And they’re coming up for a show on Wednesday, and they refuse to go to night showings so it’s a matinee and if I go to class I can’t walk to go to the matinee, so they’re just going to have to suck it up, for once. If not, well.
I can still feel the IUD in me, making my brain feel things that aren’t me. A lot of this feels unnatural, like it’s outside me, but every time I say that I’m told I’m being stupid. Just like how it’s stupid that one side of my body doesn’t work when I get a specific kind of head pain. Apparently.
I seem to have lost the ability to put things in order.
The fact still is that there is only one person in the entire world who, although he gets a lot of things terribly wrong (“um, so your receptionist just came in here and threatened to take away my ability to consent so she could break a hard limit” =/= “oh, she’s just like that, don’t worry about it”!!!!), treats me like a person and not a science experiment or a doll. Obviously, I’m not referring to the neurologist.