Broken is broken

Contains SPOILERS for the BBC show ‘Broken’

I’m going to cut all of this, because seriously, this show has so many triggers in like, four hours (so far), that like, it’s hit the red exit button for everyone I know. Everyone. And in my view, some of it was entirely unnecessary or unnecessarily explicit. But! So under the jump there will be the TW, because apparently some people got past the first five minutes without putting all the pieces together and I do know at least one person who hasn’t even watched those.

Continue reading Broken is broken

Emetic Early Warning System

TW: disordered eating, PTSD, conversion disorder, chronic pain, people being sucky, assault and implied assault/battery

 

I don’t know how to condense this into a content warning, so if I have missed anything I need to put in please let me know. I think this post is more me putting my thoughts in order and getting them out of my head so I can move on.

 

So last week I talked about how important routine is and why messing with it can be detrimental, and about subdrop, vaguely. The takeaway was that I was not in an emotional place to be making decisions.

 

So I ended up quitting therapy just after that, didn’t I? Continue reading Emetic Early Warning System

Being Too Visible

TW: disordered eating, medical professionals being sucky, gender biases, religious discrimination, workplace harassment, self harm

So, the reason I knew I could no longer stay at oldwork wasn’t that I was sick of every day being assessed on what I wore – how conservative-professional-female it was, how many times I had worn that dress before (there was a spreadsheet involved, I believe), are you sure you should be wearing those heels – or that I went from being overworked by doing my supervisor’s job (illegal) as well as mine and half of the department’s, to being the receptionist and assigned more work “because that’s what you need”… as if working for the man who actively prevented me getting the work I already had done so that he could harass me about being spiritual and Catholic, or whatever else was on his mind that day, and who whistled at me when he wanted my attention, is what I needed. Or anyone needs. Ever. It wasn’t that the one time I went in on my day off, dressed as myself, that the level supervisor followed me around, measuring my skirt and going “is that really professional”… on a public holiday, when the office was closed.

“I am here on my day off, and I had plans already;” I said. “I’m dressing comfortably today.”

Comfortably being a minidress and boots and enough chains to secure a trailer. But still.

 

Continue reading Being Too Visible

I Get The Weird People So You Don’t Have To

TW: rude people, sexual harassment, gender issues/presentation and dysphoria, suicidal ideation

 

You know, today was meant to be a twee little post about how I didn’t realise I started getting so many piercings during the period when I had to dress conservative business formal female, but I read an article about how some people with gender dysphoria get piercings and/or other body modifications to anchor themselves and get some ownership back over their bodies, brought to you by the panic attack sparked entirely by the fact that one of the gem ends on my angel bites fell out, not to be found again. I went to my piercer, who is going to try to get me a new one, and got a couple of other issues looked at, since my piercings on my right side, the one that’s affected by the hemiplegia, are all either swelling, leaking abnormally, or just being contrarily painful. (That pain is like an, ‘oh, hey, it exists’, in comparison to normal pain, btw.)

 

Instead, I experienced a series of events that made that post seem, well, twee.

 

First was the risking hellfire to acquire medication. I did get it, but to do so I had to put up with the pharmacist literally yelling at me (raised voice and everything) for three minutes about “this is for your own good so you don’t end up in hospital or dead”. Now. As you know, I don’t do talking, so basically, I go in with a note that’s way too simple, because I learned very early on it’s easier to just say one thing, rather than expect them to actually listen. So he had my note, which is just like ‘I have a migraine’. And he’s going on about how the medication can cause migraines. I saw the whole thing beginning to happen, and had my phone ready to type, and I started signing to him, and he raised his voice even more and ignored me.

“Back pain doesn’t cause migraines. You said it’s a migraine. I’ve been around a long time and I know all the stories.”

Because, you know, assuming things without actually listening to anyone is the best way to get someone the best medication, or something.

These are some of the assumptions he probably made:

  • addict
  • lying
  • not actually in pain

I took the liberty of looking up ‘can back pain cause migraines’, and got a ton of hits. I didn’t read them all, because it is kind of a well-established thing that back issues and head pain can be related, because of how the spinal cord connects to the brain stem. I also got an actual article by a real live doctor about how clinically significant back pain and chronic headaches and/or migraines have a rather higher rate of comorbidity, and possibly share either a root cause or one directly affects the other. So, it’s not like I can’t have both, right? (Check it out here.)

Coupled with the fact that I very obviously limp and was wearing my corset on the outside, well.

 

It’s not the first time he’s done it either, but he’s strange, in that he’ll go on, but still give it to me, rather than the ones who just go ‘it’s too soon’ and if I try to sign to them, say if I don’t leave they will call the police. (And, literally, I’m standing there, leaning on the counter because that’s easier than standing, signing ‘headache’ and ‘mute’. Sometimes I can’t hear because of the aura, but that’s about the worst of it. I don’t understand it at all.)

 

So basically, he went off on someone who was literally in pain, actually requiring pain relief, because you know, not having pain relief is worse for the brain than having it, because of how pain, especially chronic pain, affects the brain, and said it was for their own good. Without, you know, checking to see if they were actually sick or not. Which I am. Even my parents believe me now, and my mum is the “well if you go for a walk every day everything will be fixed” kind of person.

 

I haven’t decided whether to complain or not, yet; if I complain, I may push them to cut me off entirely, but at the same time, to go from zero to 100 on the ‘barriers to service’ is just sucky customer service.

 

And then, of course, the whole dead part. That’s just a wonderful thing to say to someone who spends a good portion of time on the ‘at least the pain will stop’ side of the suicidal line.

 

 

And then, well, I went to my piercer, and while she knows that I greatly dislike being uneven, I’m still uneven, because one side has a plain ball and one side does not.

 

And then I realised I was stuck in teh city for two hours and I’d left my knitting at home, and I was just unstable enough that not having something to do with my hands was a bad thing, so I went and bought more needles and more yarn. And then I went to my actual appointment, and then I was walking back to the car, and I kept hearing grunting noises, and it turns out that someone was following me and masturbating.

 

Good thing I never drive directly anywhere, huh? I like, make it ten minutes and then have to stop, because sitting is excruciating (yes, even with pain relief, because it’s relief, not preventative). I don’t do more than two times in a row, otherwise it doesn’t subside for long enough for me to be functional at the other end. (That’s why I can’t get to certain appointments – if the train doesn’t go there, I don’t go there. Not that, you know, the trains here are very reliable or anything, but I tried buses again and I still get spikes from buses, so.) So I stopped, got takeaway, and then somehow managed to get green lights all the way home, which took exactly ten minutes.

 

I think I will write to the pharmacy. I won’t do it now, because my parents left this morning, and I want to actually sit on the floor without the floor killing that one nerve in my leg, which means I have to put everything back in the lounge, which then means another round of higher pain from all the moving. Tomorrow will do, and I think I will frame it as recklessness – by assuming one thing, he neglected to provide the correct advice, therefore reckless to the possibility that he could have done something to actually help. I mean, like, in the last six months, only one pharmacist has recommended anything else, and then she got her supervisor to come and yell at me when I signed that it made me throw up (her supervisor was like “I know you can’t hear, honey, but we can’t give you anything”). I know, paracetamol allergies aren’t as common, but honestly, I’ve had it diagnosed twice (I get a rebound headache after I throw it up and I get a big rash on my face). I have a documented reaction to lactose in medication, the time my GP was like ‘oh it’s not that much you can’t react to it’ and then was like ‘um, whoops’ when I went back with swelling and fever – after one dose. I have tried triptans, but because my primary migraine is hemiplegic, they only made it worse. I had four weeks of constant aura because I wasn’t allowed to stop until the script ran out and I had to go to three different pharmacies because none of them kept enough to fill it.

 

I’m not sure why anyone thinks I want to be like this – in constant pain, counting the hours until I can have another tablet and get maybe an hour where I can do things without crying. I had to get my dad to cut me a wrist brace, because I couldn’t work the scissors, and I made mashed potato for lunch – it was meant to be pancakes, but I couldn’t work the flipper, because my wrist was that bad… on my good side. Instead of having severe pain for one or two days that subsides to a barely noticeable ache, I have the pelvic-ovarian-groin-depends-who-is-talking-pain all the time, at a warm, redwhite ache that, when I sit, stretch the wrong way, move, you know, do stuff, turns whitewhite and sharp. I haven’t not had back pain since the surgery, when before if I had four days rest I could do without the tablets. That, too, is worse if I do anything.

(I have yet to hear of purely neurological pain being triggered by physical activity. If the best explanation is ‘the nerves misfire’, then the nerves should misfire at any time, not directly correlating with position and exertion, but if someone corrects me and then fixes it I would seriously be happy to learn a new thing there.)

I know, if I am not in pain, I do not need the tablets. I don’t think anyone else does, or wants to.

 

So we’re back to this very different fundamental thing – it’s easier for people to stick labels on something that they don’t understand rather than try to understand it. It’s easier for the pharmacist to yell at me and assume I’m looking for a high than it is for him to take ten minutes to have a conversation with me and ascertain that I am actually in pain that prevents me doing things, and be polite about it, because that’s what’s in his mind at the moment. It’s easier for him to do that because I am visibly identified with a subculture that people look down on, because of my piercings and because I don’t treat my corsets as underwear. It’s easier for people to blame me, because I’m one person they don’t know much about, rather than say ‘the system is failing here’, because we’re meant to trust the system and that it will look after us. There is still a gender bias in diagnosis, too – from autism to migraines to chronic pain, people who appear female get sent off with ‘depression’ and ‘anxiety’ a lot more, until it’s too late and many end up with permanent damage, if not a self-fulfilling diagnosis brought on by being misdiagnosed and/or undertreated. Then there’s people who have mental health diagnoses and/or are neuroatypical beinng ignored or dismissed when they go ‘no, this is an actual problem, please fix it’, which is where I’m at.

 

I don’t do labels, generally. People come out to me and I look at them and say ‘no, you’re a person – that’s not all of who you are’. Once someone puts a label on you, they don’t take it off, because that’s how people’s brains are meant to work – big filing systems. Mine doesn’t work like that – I remember people by context. Usually, actually, it’s their hair. My singing teacher is the way his hair curls at the point where his neck meets his shoulder, and sticks there when it’s wet. My dad is his beard. My mum has a bob. My brother’s hair is the same colour as mine. My grandmother used to sit at our kitchen table as she got a home perm, and I learned about the different kinds of comb as I watched the curlers come out.

 

Now, miraculously, I get four whole days at home. Once I put my stuffs back, I can rest for four whole days. I have enough tablets to get through the entire long weekend without going out.

First time in… a month. Ish. Yeah. Six weeks. I have three meals in the fridge, so I don’t have to cook for at least two of those. It’s going to be amazing.

But not enough.

 

I feel like going back to the pharmacy and being like ‘it’s been a week now may I have my meds please’ and seeing what happens. That would be amusing to me.

But, you know, I can’t help but notice that having to randomly go out to get more and prepare to fight for it every time is actually corresponding with more pain, and needing to function through more pain. I used to be able to get enough for a few weeks at a time and then just stumble out for appointments and necessities. And, you know, rest.

 

But at least he yelled at me and not someone who couldn’t see straight through it. The end result? I have even less trust in pharmacists than before. And they want to be the front line and take the pressure off GPs? Yeah, no.If your healthcare system is such that entire classes of professionals are overworked, you need to fix the system, not yell at the patients for being sick.

 

Excuse me, I need to stop sitting now.

 

 

 

It’s not just an overlocker

TW: self harm, emotional abuse

 

My parents are coming back in a month. Mum made it very clear they can’t afford to stay in a hotel. I was very lucky to be cast in a movement piece that could be customised for my particular braind of disability. Under the guise of “coming up to see your show” they are ensuring that I will have to quit, because it is very clear that having them here will prevent me from being able to participate.

 

I have DSPS. They have to be in bed by 11pm. I normally go to bed at 6am. That’s eight or nine hours, by the time they sit around drinking, fold out the bed, sit around drinking, that I can’t use my television, my kitchen, my laundry… I am stuck in my sleep room or my room, and I can’t put on music (I need music). I can’t sleep when they’re here, because if I do, I get up to find things have been rearranged and occasionally that strangers have been in the house. The day/night/day before they come is invariably spent curled up somewhere, bawling my eyes out and reminding myself of all the reasons why barricading the door is bad and I have to be good.

 

Naturally, the house wasn’t clean when they got here. “I will help,” Mum said, and I tried to stop her. Instead, she rearranged my kitchen, making things harder. Then she walked out. She came up again a few hours later, asked what she could do, and then walked out. I didn’t finish doing the dishes until well after I had also had to cook tea.

“I’m sorry I didn’t help, I feel bad.” Mum said. Dad took half the recycling down. Two days later they asked about the rest.

“Don’t bother,” I typed. Because, really, what does it matter if I’ve already spent half the time walking on empty PET bottles if they have a neat room to live in. I sure as hell don’t want them in here, where I stash everything I don’t want coated in nicotine and passes as objectionable.

 

Naturally, Mum ‘forgot’ that she’d promised to let me get takeout. She started planning meals, then complained that she’s “not this organised at home” when I pointed out, again, the meal plan stuck on the front of the fridge. I’ve been making a meal plan every time they come for two years now, since Mum chucked a fit about cooking because she “never gets a break”. Now I don’t, and I don’t even have an oven, and I went two visits without any food at all because I wasn’t included in her meals. She decided on having lunch out before the show, bought meat and complained that the cheese wasn’t nice. Then she shoved the meat in the fridge, then watched me running around the house trying to find it. “Obviously you’re looking for something,” she said.

She didn’t think, she said, after confessing she put it in the fridge without it even being wrapped. I’m vegan. I am vegan because meat makes me violently ill, I’m anaphylactic to dairy (so of course she brings her own dairy milk from home, as well), and when I started cutting things out (after being forced to eat them until I moved out), I started reacting to everything else. They can’t even keep the dishes separate, so I have to wash their dishes in disinfectant to keep contamination to a minimum.

“It’s very nice,” she said about tofu scramble, entirely forgetting that she’s had it before. Not like I asked.

 

Same like every time I was dressed in outside clothes. “That looks nice.” I didn’t ask. My outfit is not up for comment.

 

Tuesday we went into the mall. Mum kept running off. Dad had to chase her once. Another time I did, and I had to grab her jumper and pull her back. She says it’s because she can’t hear. Instead of staying with me, she can be 20 or 30 metres away while I’m waiting outside a store. I tried to take them back to the car and they wouldn’t get in the lift. “I thought you didn’t want to go,” she said. Then they told me they got lost trying to find the car on their own, because I hadn’t shown them the lift.

We went for fish and chips, and I was so grateful that the fish and chip shop people know me, because we ate there and they brought out two plates of chips, so that I could have chips which weren’t served with their fish. I nearly cried.

“How do they know you, though?” they kept asking. Never mind that we’ve been going there for twenty years.

 

Wednesday we had the show. I had prepared as best I could. I managed to convince them to prebook parking and explained how it worked. We took a picnic instead of eating at home first, so it was very rushed, as I had booked the carpark later to accommodate, knowing it would be very busy there and that the earliest I would be able to leave, given that I had actual work to do prior, was 11am. Eat lunch, go in, park, go to show, sneak in snacks.

Except I went to put the serviettes, cutlery, and bags for the snacks in the bag, and the bag was gone. We ended up in the city, only able to eat half of lunch, because there was no way to cut the apple and no serviettes for the blueberry danish. The bags had been snatched from me when we got out of the car, too, so I had to arrange them as I limped, one starletto stuck on the bottom of the car, my wallet left on the back seat, while I was being yelled at for limping and being in pain. I ended up taking my shoes off to walk, because without the starlettos the heels got caught in each gap in the footpath.

“We need to eat now; we don’t have time,” I tried to say.

“Let’s go eat on the river! It’s so nice today!” And so, I had to sit outside, the sunlight stabbing my head.

When we got inside, finally, Mum ran off again. I found the very last seat and tried to arrange everything. Every time I put something on the floor, my Dad grabbed it and put it on the chair or on the table.

“No, Dad, I’m sorting, I need them down here.”

It took Mum half an hour to get a coffee. “I didn’t think it would be so busy,” she said. “I’m going to complain.”

You wanted to go to a matinee because you thought it would be less stressful.

 

Then I got yelled at in the show. Turns out, unsurprisingly, that a show that spends ten minutes establishing that people don’t like to be called by a whistle is rather triggering for someone who had to walk out of their previous employment, in part, because one of their direct supervisors used to call them by whistling.

“Stop moving,” I was told. Never mind that I’d already scratched through the skin on my hand, and I couldn’t have my snacks because the picnic meant I’d had to make a show of eating, while in my corset, and Mum had staked mine out for her own anyway. We were in the front row, so I couldn’t do anything else with my hands or I’d distract the performers.

 

“Oh, you left your wallet in the car too!” Mum said, when we finally got back to the car, after we’d stood around waiting for her to finish smoking. Despite it being illegal to smoke within three metres of a covered bus stop, you know. “We could have come back!”

We didn’t have time, because you wanted a picnic. And Dad had decided to have someone come inspect the garage door, and broke it, because he decided I (despite being perfectly capable for the four months they refused to have it fixed) wasn’t able to put it up myself. Also, that it didn’t need to be unlocked first.

But you know. I looked nice, whatever.

Then I had to remind then that they’d promised takeout. “That was so nice! That was so easy!” they said after. But I was exhausted from reminding them, again, of how to order, that it was possible to order… I put on a miniseries, and fell asleep on the floor, having argued about where I would get to lie down, because Dad now also refuses to sit on the couch, and won’t move his chair to see the TV. It was the only peaceful sleep I got all week, and only because somehow my brain sees Sean Bean as safe and I always sleep through everything he does.  We were going to finish it the next day.

 

I made the mistake of showing Dad the overlocker I’d bought. He promised, when my handbags all broke, months ago, that he would bring up his overlocker and fix them. I bought one on sale, so he wouldn’t have to bring it, and then he could FINALLY show me how to thread it and I could line things properly rather than spend three hours hand-sewing lining on everything. So when I got up on Thursday, after getting an hour more sleep, he’d taken it outside, unpacked it, and set it up on the picnic table.  Outside, you know, where there’s sun. He took my fabric, a 1m remnant meant for lining glasses cases, and started making corset bags. Without me. And he finished two, entirely too large and along the wrong grain, without the ribbon channel, before he tried to interrupt me cooking lunch to ask if they were what I wanted.

wanted to spend time with him, like when I was little, and he would make one half to show me and then I would make the other half. I wanted him to show me how to thread the machine instead of teaching myself from YouTube and the instruction book (which is now missing, thank you). I was going to set up the table inside and put on Sean Bean and it was going to be a Good Day.

Ended up my day off was an emergency trip to Spotlight, because he needed the sewing machine as well, and in getting it out, managed to lose half my thread and my special red buttons, which magically, I needed, because Mum wanted a gift for my uncle. And, because I had asked and before Dad started, he had not cut me a square for lining the glasses case I was making, I needed new lining as well.

 

When I got back, the overlocker was packed up, and Mum and Dad were fixing the toilet, because Dad finally noticed it was broken, and Mum had finally snapped and made him do it. Or something. So much for Sean Bean; I ended up chucking on an anime just to make sound, and that’s when everyone sat down to watch it – except it was yaoi. Yeah.

 

Then Mum got upset because my favourite player was injured and dropped from the team since she’d come up especially to watch him, and then that we lost. I was upset that I’d spent half the day making a blueberry bread pudding, soaking it in rice milk and everything, only for Mum to refuse to eat it because it was “too hard” and that they’d decided to eat their very not vegan pizza off plates rather than paper towelling, so I had to run around washing up as well. I would get them their own plates and cutlery, but they’d either not use it, or wash it all together anyway.

 

They left on Friday. Mum started crying, because she didn’t want to leave. I hadn’t been able to sleep. I kept hearing them in my head. I was hallucinating them, little versions of them walking on my desk as I tried to write. It is still so cold in here, because I had to have all the windows open for the smoke. Mum had yelled at me for that too; I had one window a little bit open and she had trouble closing it. She couldn’t find Dad, and wouldn’t ask me, even though she saw me open it.

 

The absolute most hurtful thing from Mum was when she was complaining about Dad. I’m in the middle of whatever domestic they have going, all the time.

“He’s like you,” she said. “He can’t adjust to losing his job. He won’t even talk to anyone from work, even to be polite.”

Because my brain disorder, disproportionately presenting because of PTSD from being systemically bullied, a situation which she repeatedly told me was my fault and she wouldn’t help me leave, is comparable to whatever my dad’s got going on? It’s not even hereditary. She says she can’t cope with him either, but refuses to leave.

 

I have a very tiny amount left in savings, enough for food for two months. If they can’t afford a hotel, if that’s their excuse, I will book them a room and go without food. They won’t take it, though.

 

Meanwhile, I’m being sent for a psych eval for disability. I need to prove my PTSD is bad, so they’re sending me to a psychologist, who probably has no idea how my brain is actually broken. They sent me a letter about it. I hid the letter before my parents came, so they wouldn’t find out and insist on staying “to be supportive”. (They’ve done that before actually. I had a psych eval for workers comp, the psychologist yelled at me for not being able to talk, then was very contrite when he realised that I wasn’t just faking it, and suddenly, the next time I had an appointment they were here. To be supportive. And they were rather pissed when I chose not to attend. Or rather, their presence made attending need more spoons than I had. Like performing will.) Now, of course, because I hid it while I was having a massive breakdown, I don’t know where it is, so I don’t know where the appointment is. Funnily enough, all the searches I have tried have no record of the psychologist. It’s not in my online services account as a mandatory appointment. But, the letter was very carefully vaguely threatening – if I don’t go, I don’t get disability. If I don’t get disability, I’m not eligible for priority government housing. I can’t access emergency housing because to do that I have to call them using a paid phone number, which I can only do with the relay, who yell at me for not being fast enough and then harass me all night if I end the call.

 

When I was making food today I saw the corset bags and started crying. I tried to unpick them, but I ended up having to cut the seaming off. The fabric is now useless for anything, because it’s cut to such a weird size. I tried to get the overlocker out, but it’s stuck in the foam, the book is missing, and I have to remind myself that I went without food for two weeks to buy it so that I don’t smash it. I don’t want it in the house, because it’s a ball of dark negative energy. I tried to put it outside, but then I kept thinking ‘what if it rains it’s too expensive to get rained on’. I was keeping it in the garage, but I have to put the bin out, and it was on top of the bin.

 

But I don’t want it in the house. I don’t want to look at it. It’s contaminated, for me, because it was meant to be mine and instead my dad was just like ‘oh shiny! i want to play!’ and took it and now it’s set up for him, the same way I can’t use the sewing machine because ‘there’s a trick to it’ because instead of threading it, the thread has to be pulled in some arcane way that puts more tension on it. I suppose I should be grateful he left it threaded, except the threads are so tangled from the spindles being removed and shoved in a box under foam and then thrown around when I tried to get it out, that it needs to be rethreaded.

 

And now that the book is gone, I literally have no way of working out how to fix it.

 

Except, you know, waiting a month for them to come back and mess things up some more. Which is, obviously, the very last thing I need.

 

Now, of course, I have to go to the psychiatrist tomorrow. He will tell me it’s not so bad, express confusion that I’m not getting better because I’m not at work anymore, even though the actual situation is ongoing. He will offer to have his secretary call to find out the psych eval appointment for me, because he doesn’t know that she hates me and is a rather insensitive person (she yelled at me for forgetting my glasses, after making me drop everything to sign the forms, while I was picking up my bag first because trying to put a broken bag over your shoulder is ten times harder when you’re holding two pairs of glasses, an mp3 player, and a teddy bear – literally less than a minute after I put them down in the first place, after not being able to sit for one minute to put anything even in my pocket. And! She yelled at me for arriving while she wasn’t there. Seriously.) or understand that the problem is that it’s at 11am and that I had to hide the letter in the first place. He will also yell at me for not going to the neurologist appointment, which I was never informed about in the first place.

Then, on Tuesday, I have to go to class, put up with my teacher complaining about other students, and asking how everything went.

 

And of course, being here isn’t as comforting when I go to get something and it’s not there because I had to hide it/put it away/it was moved for me because “it was in the way”/they were just here.

 

Mum broke my blocking board which I made especially for the blanket she demanded – a 160cm x 160cm monstrosity I’ve been working on for a year already. I finished another square to put on it, after I spent half an hour fixing it and sliding the squares on the new needles.

“You finished another one!”

Yes, Dad, it’s so obvious you don’t even need to comment on it.

 

I have been crying for four hours straight now. I don’t know what else I can do. I’m sure it all seems so little to everyone else. It all adds up, though. My brother moved to Germany to get away from it. I had plans for London. Unfortunately, they make you pass a medical exam and have employment and a ton of savings before you move there, to prove that you won’t need any assistance. My brain means I will need the NHS. Bye bye London.

 

 

 

 

 

 

 

 

 

We are people too.

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.

 

 

 

 

 

 

 

 

 

 

Disability, woo! pt 3

TW: reproductive medical stuffs, depression, anxiety, bureaucracy, suicidal ideation, rape, asexuality/genderfluid/trans* issues, eating disorders

Previous: Disability, woo!Disability, woo! pt 2

 

I have, this entire time, been denying being depressed. I wasn’t. My brain shut down and routes things the wrong way. Technically, it’s not possible to be clinically depressed with my disorder presenting the way it is.

The Mirena came out, and within a week, I was bleeding. (Yes, I know, it’s not blood, but it not being blood is worse, okay?). For two weeks, I have been avoiding going to the toilet because I see a pad and I cry. I also cannot throw out any rubbish from the bathroom because I am missing a necklace and if I throw anything out I might throw out the necklace. It’s not a great combination, as you can imagined. Initially, the Mirena was meant to stay in longer, but it was affecting me so much that was impossible, and now here I am, with a two-week long period after not having one for nearly six years. I thought I would be suicidal. I prepared for that. Instead, it’s something much more insidious – something that very much resembles depression, but isn’t. It’s a combination of dysphoria and dissociation that very much resembles how I was when I left work in the first place, but now with bonus not talking and random times where I can’t walk. (When I left work, see, it was just during panic attacks. It was dealing with workers comp, and my former supervisor harassing me outside work, that sent it to how it is now. All this at the same time as coordinating my brother’s wedding. How half my family doesn’t know I’m sick is amazing, really. They are exceptionally clueless, but still.) The whole point is that emotions are sent into the communication part of the brain, so I don’t feel them. Before, it just meant that my brain shut down for everything, and they thought it was anxiety and wondered why the meds didn’t work (I tried one of every class. I have a list of “unusual” side effects that are mostly because these things are meant for things I don’t have. Like how the migraine medication gave me migraines because my migraines are hemiplegic and it was not formulated for hemiplegic migraines. “Finish the script, they’ll start working,” the doctor said. Yeah, they did not. I went through six months of triptans in four weeks.) This is because, over time, and with everything I have had to do, I have transitioned. It is no longer acute conversion disorder, in that it’s a thing that presents under certain conditions for a short time and then stops. It is functional conversion disorder. It is there all the time and a thing I function through. It’s not going away. All the things are going through the wrong parts of the brain – the stress, the tears, the angst – and affecting my communication and movement. It’s not a snap decision, an overwhelming need or a sudden feeling of helplessness.

No, this is planned. This is logic, somewhere that isn’t meant to be logical,  and it says that if the bleeding doesn’t stop by Tuesday, and if moving around makes it worse when I go to speech therapy, then it’s Plan A. If it actually stops, instead of being infrequent and unpredictable, then it’s Plan B. These are plans that hang around half-formed, and get put off by “I am going to a meet and greet in August so I can’t kill myself until after.” Except, that doesn’t matter, because now there’s a thing. All those stories about artists pointing out people who are using their phones, or not paying enough attention, that’s been me in the small seat. Plan A looks a lot better than putting it off in favour of abject humiliation by a stranger, for which I am trading food money. This is ‘remember when you went to meet Adam Lambert, because if you bought a photo op you got early access to merchandise, but you didn’t get early access to merchandise, some lady in the line decided you were deaf and took over and signed for you until you signed back with the middle finger, and then the organiser gave you special attention and explained to Adam that you couldn’t talk because you were deaf so it didn’t matter that you practiced so much because you were so humiliated that nothing would have come out and you had to run away because he said you looked beautiful after everyone had been telling you off for wearing a corset and trying to play with your hair, then you had to wait in the crowd for merchandise, and because you asked about seating you got stuck in the disability section and couldn’t dance and people kept pushing you because they couldn’t see and they thought that was justification for patting you and pushing you; that will happen again, so don’t wait for it’.

 

Plan B is longer-term, of course, dependent on another outcome.

Plan B is if I do not get disability.

 

When I was preparing my application, I added my voice to a group of people discontent with the application process – the length of time, general inaccessibility, lack of updates. Except some lady picked up on mine, and amplified it, so I was asked to provide my feedback directly up the chain. By this time, I had been forced onto unemployment as an “interim payment”, meaning that every second Thursday morning at 12:01, I have to log in, and spent upwards of two hours reporting my income. I am not allowed to work. I have no income. If I do not log in, because I am asleep, because I have a migraine and can’t see, if my hands don’t work, I do not get my payment. This means this is a source of anxiety, and it is a trigger, because the concept is “but you have to or you won’t get paid!”, and that is what people told me, over and over, when I told them I was being harassed and bullied and asked for help to get out. The first time, it didn’t work. The page kept disappearing, and I tried another browser, another computer, and when it finally came back I pressed the button and cried myself to sleep, then slept for ten hours. Of course, there are no problems with the website, and if you go in, they just make you do it there, with a person standing over you to talk you through it, because clearly everyone is three years old. The second time, it wouldn’t let me fill it out properly, meaning I had to lie to get them to accept it, like how I had to lie about all the work I was doing illegally, because it was, you know, illegal, and if I told I would be in trouble. (To this day, I don’t think anyone knows how much I did that I wasn’t supposed to.) I sandwiched it with a bunch of other unpleasant things, but this dissociative fugue thing had already started, so all I got was a headache, and tears, and wondering why it wouldn’t just let me click the button. My psychiatrist was very explicit with me – he does not want me on unemployment, because I can’t cope with the requirements and that will make things worse, not better, not the same. Obviously, dealing with it is part of how this is happening now.

So, when I gave my feedback (in an email, so it was not exactly easy. I do email once every couple of days, and sometimes I just mark everything as read so there are no notifications but I don’t read them, because I can’t), I was as clear as I could about how each part of the process affected me. One thing that I mentioned was the scheduling of a mandatory medical assessment. When I walked my application in (the only way to lodge it, of course), the lady I saw tried to make the appointment for me, and she was not allowed. I received a letter, eventually, four days after it was generated. My appointment had been scheduled in the morning. I have DSPS. I also can’t sleep at night, because invariably, I wake up before 4am, and I can’t get back to sleep, because I have to be awake for the alarm because if I am not at work by 6am I will be in trouble because the office won’t be set up for the day. To get enough sleep, I have to go to bed after 6am, or it has to be one of those days where I sleep all the time. Morning appointments mean no sleep at all for an entire day – I will get up at 12pm the day before, and not go to sleep until 6am the day after. This is why the lady took down that I need afternoon appointments, and not on the same day as speech therapy, because that is also impossible because of the time I need to prepare.

I explained that, and pointed out that the short notice (compounded by the digital copy taking four days to arrive) made it hard to arrange a support person as well.

Among the other things I was told (we don’t do email because it’s not private, so you have to involve total strangers because we say on our website that you can use the relay to call us!), they said they could reschedule the appointment, and had an entire paragraph warning about how if you do not attend this appointment it will delay the processing of your claimI wrote back, because that is what they said to do (and email is exposure therapy, and I’m trying really hard, but it will always be a sometimes thing), and I was slightly sarcastic, and said that I would prefer it rescheduled so that I could actually be conscious while attending, and these are the times I gave the lady.

A paper notice of the original appointment arrived the day after, so I spent the weekend wondering whether I was meant to go or not. As it turned out, I wasn’t able to, because my brain broke down under the strain and then I started bleeding. So.

I received three days notice of the new appointment. It was at the same time as the second followup with the gynaecologist, the one I’d been trying to cancel anyway, only to find that their office was locked during business hours (so I couldn’t deliver a note), and they didn’t have email (what?). I managed to cancel it by having someone call for me, and the receptionist actually thought she was me, even with the whole not-able-to-talk part. But it was cancelled, and not rescheduled, so that was that.

The only reason I slept on the day was because my sleep schedule got out of whack while adjusting to attend the morning appointment, and with the Mirena coming out and the period, I was back to not being able to keep down food over the weekend and ended up with five days in a row of 18 hours of sleep. When I woke up, I knew what day it was and started shaking. I spent an hour on simple makeup, because makeup applied in a sufficient layer makes it so that I cannot cry in public unless it’s really bad (like, say, bumping into the man responsible for the concussion that exacerbated this in the first place, or being assaulted for ‘looking nice I just had to tell you’ bad). I was prepared, damnit, and I was going to make the best case possible. There was a lady casing my house from her BMW as I left, but she had gone when I went around the block, so I’m not sure if she was watching me because she was waiting for someone, or was looking at the house for sale next door and ashamed to be caught, or something. It threw me. I got my meds, I got my mail, I checked that the lady hadn’t come back or broken into the house, hugged my teddy again for good luck, and went.

I found a park all the way on the other side of the shops, very easily for a weekday during school holidays, and I was able to duck in and get a drink before heading over to the government office and getting in line. It was 1:50pm, and my appointment was at 2pm.

The first sign that it wasn’t going to go well was when it was my turn at triage. See, even though I had an appointment, I had to wait in line, and get it entered in to the computer that I had arrived. Armed with a note with my ID number and the reason and time of the appointment, I was ready to combat the snatching-form-out-of-hands, I-can’t-understand-you-that’s-not-a-real-number-this-isn’t-you, and sit-down-until-the-Auslan-interpreter-is-free. Instead, she thanked me, and shoved my note back in my hands. It was entirely unnecessary, of course, and entirely ignorant of how I don’t like things being handed to me, and I can’t touch other people. I wouldn’t need it again, anyway.

There was a man in the same waiting area as me. He was swearing into his phone, so I put my headphones in both ears. I’d seen the room being prepared while I was in line, and while my suspicions were largely confirmed, I still had hope that I was wrong. After all, I was meant to see an independent medical professional, to be assessed as to whether they agreed with my doctors that I am unable to work the amount of hours stated as the threshold for qualifying for disability. I’d noticed, that morning, when writing my note, that the type of appointment had changed – I thought it was a mistake, because it’s a mandatory part of the application process, and very specific. But the employee, with his nametag and all his papers, was calling my surname when I saw him walking to the waiting area. So, not exactly a medical professional. He didn’t introduce himself as one, either, and he even had a name on the desk.

“My job today is to make sense of all this and write a report that makes sense for the person who has your claim and decides it,” he said, eventually. Nothing about being a psychologist, or a counsellor, or anything.

I was suspicious, and I was right, and I felt endangered. That’s a hard thing to describe, how it feels to be genderfluid, with a cismale twice your age holding power over you and your future, looking around. “I thought you’d have someone with you,” was the first thing he’d said. “You should really have a nominee.”

He decided he would only ask yes/no questions and he gave me a little notepad and a pen to write on. I was wearing makeup, so I couldn’t cry. I have no friends, no local family. Who I am going to ask to advocate for me who isn’t going to treat me the same way as he was? He had written Miss on the medical authority, clearly ignoring my preferred pronoun on the form, Mx. I like Mx, because I get laughed at if people use Mr, and Miss/Ms have sexual connotations around their femininity. It was hard enough to sign the damn thing – to write, I have to use my non-dominant hand, position the pen, make a fist, and scrawl as best I can, so my usual thing of crossing it out I deemed too much trouble, and because he wouldn’t let me type to him, explaining that I am not a girl would have been impossible.

He realised writing was impossible when he ignored me signing the numbers to him and insisted I write down how many times I had seen my psychiatrist. “SI”, it looked like, after a minute of arranging the pen. “Fifteen?” he said, squinting. It was fifteen after that, even after a look at my forms indicated that my writing, even when I’m biting my piercings and taking my time, with a big thick pen that doesnt hurt so much, comes out backwards and not very neat. “Twelve! So he knows you, then.” (This has progressed, by the way. When I had turned off my computer and realised I forgot to put some things in my private journal, I tried to write them down. Entire words now come out backwards, not just letters, and it’s not consistently so.) Writing anything in front of people is humiliating for me. I type to my psychiatrist, and he keeps what I write on file, because that’s useful to him, and he tells everyone he refers me to that that is best. It was even in the report. But, you know, typing to this guy was impossible, even though I brought my own to use.

Apparently, so was asking yes/no questions. Despite asking about my workers’ comp claim, which they were already informed of, he wanted to know how I had been surviving without welfare. “Savings?” “Your parents?” “What then?” I tried to type, and he told me off. “I don’t need a complex answer, it’s not relevant anyway.”

He was weirdly obsessed with something from a previous assessment – that I used to do cryptic crosswords. Obviously, this is impossible now – I can’t do paper ones. He couldn’t get that. Then he asked if I could read – something I had said in my statement of how my condition prevents me from working. I can’t understand things when I read them. If I read this back, I would not understand a thing that I’d written, and I’d be struggling to summarise it, let alone reconcile a fact from the top of the page to something here, halfway down. Typing these entries takes hours, sometimes even a couple of days, and then I have to correct my words and grammar before posting, because letters get mixed up, my hand can’t manage making capitals because it requires two buttons, and I ramble because I can’t remember what I just wrote. But! He asked if I could read, and then decided that my migraines prevent me from doing so. Not, you know, my brain being wired the way it is.

He wanted to know if I had any physical disabilities. “Do you have anything else?” is how he phrased it. Bear in mind, anything other than the reason on the claim form and in the report from my psychiatrist cannot be taken into account in the decision. It doesn’t matter that I drove there, indicating that I can drive (even though I probably shouldn’t, and the only reason I do is that public transport is inaccessible to me, as the train station is too far to walk to since the operation, and buses give me migraines), or that I do my own shopping (online or at quiet times, where they have self-checkout or the people know me. At my nearest Foodland, there is one girl who always clocks on to check me out if she is there, because she realised I can’t talk when I was searching for my missing binding ring, and now she actively makes sure I get what I need. I appreciate it, because everyone pretends she doesn’t do it, and no attention is drawn to me in the process. She even avoids doing things like loading six bottles of Coke and four boxes of icecream in the one bag. I may be a dancer but I’m not a weightlifter, and I can only carry so much on one arm…), or that I don’t dance at that school any more (because instead of fixing their shit, they told me it was my fault I was being bullied for not talking and needing a corset, because I don’t work hard enough to be nice, and it’s not their responsibility to provide a safe class environment because people should stand up to bullies and that will fix it). He already knew about the migraines, because there’s no hiding from stuff they already know, although he only had one old assessment there, and not my previous ones. I managed to point to my back, but while I was deciding how or whether I should point to my tummy or between my legs, or if I even felt safe doing that in a room with a cisman with the door closed… he moved on.

When he wanted to know if I had a GP, I was able to say yes, because I finally do. Except she doesn’t know about any of this, because my psychiatrist is away and I gave up trying to explain because there are many things I do not actually know, or understand. (For example: how did a slipped disc disappear in 18 months? Can a corset really fix that? Because, if it did, I’m definitely converting to 24/7 and waist training, and everyone who tells me off for ruining my back can be told to go jump with an expressive glare and no further contact.) He wanted to know who she was, and wanted me to write it. I typed it out, though, and he was like “oh! you have it in your phone?”

Then he tried to take my phone from me. I pulled it back, and he pulled again. “I need to write it down!” he said.

When he finally let go, I wiped it with a tissue. “You don’t like germs?” he said. “That’s important, too.” He wrote that in the top corner of his cover sheet. No apology, of course, not even to have a pretence at making the rest of the appointment palatable.

Then he told me I wouldn’t be able to get my payments because my disability would prevent me from meeting the obligations required to receive them. He reached over my head, trapping me in the chair, because he wanted me to sign up for a mentor at a church program, not my church, a program I know is underfunded and filled with people who are not capable of helping me, because I used to handle their stuff for them when they couldn’t. When I typed to him that i cant deal with more people right now he started yelling. “It’s just for later! You have to make your GP refer you!” I was impassive. I ignored him. I left.

I am also not meant to deal with new people without my psychiatrist’s assistance and approval – the new GP was a special case, because I could not wait another month with the Mirena, and I had to fight so hard for that it exhausted me. (Stress can cause periods. No wonder it’s not stopping.) I went to her with a letter, and I gave her my psychiatrist’s name and number, and authorised her to talk to him for anything else. I couldn’t take a letter to this appointment, because I had no idea what I needed to convey, and I had already said the important things. I was very lucky with the GP, a combination of praying really hard, being absolutely desperate, and asking the Internet for help. (The internet tells me, also, that as genderfluid and asexual, I qualify as trans*. I don’t know what to think about that at all. I just want that stuff inside me gone so I know that when there is pain it is not to do with a thing I do not have. Try explaining that with yes and no. Apparently this is why American people don’t like putting A in GLBTQIA, because asexuals aren’t minorities who are oppressed, and everyone fits under another letter. Having been subject to rape explicitly because I said “I do not want it, I do not like it, my brain doesn’t react in a pleasurable way and it makes me feel uncomfortable” and being told I just hadn’t been trained right yet… I beg to differ. See how I ramble.)  But I will be unpacking that as soon as my psychiatrist is back because, again, depressive dissociation thing. I’m even back to the bad way of eating, stuffing myself when I’m not hungry with things I react badly to, expressly so that I can throw up and say I’m sick so I can’t do things, hoping to get out of whatever comes next. I don’t even know what the name for that is. Since I had the period-throwing-up last weekend, I have only had vegan schnitzel sandwiches, packed full of nasty nasty gluten and that thing that isn’t chia and probably begins with f. In fact, I went from the appointment to the supermarket, spent money I don’t have on more schnitzels, and today I made myself throw up because there are bits in them that look like when you get a vein in steak, and the texture of those makes me throw up. Nobody believes me when I tell them I don’t weigh myself because I know it would become an issue, because the 25kg weight loss is meant to have stabilised (it hasn’t) and “if you just eat more you’ll be fine” which is now a trigger, and “but you don’t have any history of eating issues” despite repeatedly fighting referrals for anorexia because the weight loss is because it hurts to eat and being super careful about sticking to safe foods except, when, you know, not. I wonder if that was important for him to know, too. He didn’t ask. I couldn’t yes or no that, either.

 

I kept my sunglasses on in the appointment. This is a strategy, because their lights are fluorescent and blink a lot, and they hurt. It also is an indicator for me, because I dragged myself to my previous reproductive health person with them on, and she told me to take them off, and proceeded to tell me my migraines weren’t real, even though she’d previously happily recognised them as a sign that I needed to not be on tricyclic pills. He asked me if I kept them on at night and how I saw to drive. I pointed to the light. LED headlights are worse than fluoros. I have my car windows tinted to the max, maximum rated sunglasses, and it’s not enough. However, this is also not relevant, because while my psychiatric condition is related to migraines and headaches and brain fog, that is only one kind of migraine. The most troublesome kind is one I do not understand, the one on the right that feels like a stabbing pain, comes on without warning, and then just sits there like a hole above my eye. That’s the one that came with the words going, until that became permanent. Apparently, developing lesions in certain parts of my brain, ones that weren’t there after the concussion that sent my hormonal migraines from annoying to debilitating and come with stabbing from the back of my head, have nothing to do with that. Perhaps that’s why the neurologist won’t let me make an appointment to see him. My hormonal migraines, really bad at the moment because that’s how they work, are not psychiatric. Also, not relevant.

 

I was so exhausted when I finally got home and I wished I could cry. I wiped down my phone with antibacterial wipes, but it’s not enough. It’s still dirty, and if I touch it I remember him pulling it away from me, ignoring me. I want a new phone, one that is safe, but I can’t afford it, and nobody will help me buy one, because I asked (My last phone lasted three months, because someone stole it, then after finding it didn’t have personal data on it, left it at the post office and my dad picked it up. I noticed it was gone and went home, and Mum raced out behind the car while I was reversing and couldn’t understand why I was angry with her. She’d called my dance school and told them to tell me she had my phone. My teacher made fun of me. I nearly hit her with the car. My pictures were gone. The post office people laughed at me for losing my phone. It was dirty. The stranger who called my dad to tell him where it was left said it was his son’s phone, so my dad was angry at me because he still thinks I am a girl, even though they raised me genderblind. I really liked that phone. When I had to get a new SIM for this one, they gave me a combination SIM, and as I was sorting out my bag so I wouldn’t lose the tiny thing, the attendant came back over and popped all the parts out, so I wasn’t actually able to get it into my phone. He decided he was “helping” by explaining to the retard, which is what I heard when I was walking out. The manager said he was very sorry, but he remembered the incident because he was the person who did it. I can’t switch providers – the account isn’t in my name. If I switched providers, they would give me a new phone with the plan. I can’t pay for the plan because I do not have money for that on top of medication and ice pads). It will be like my bear, and like the shows, and no longer be of use.

 

This is why there is Plan B. It is the same as Plan A, but it can’t be put off, because nothing works any more. It is a clear, logical thought that is rare in my brain. It is a conditional.

If your claim is denied, and they put you on unemployment, you appeal. Appealing is a legal process. It is not new. It will require you to undo all the work you have done in becoming functional, and go back to that old person, the one who worked seventy hours a week and had to lie about it, who only slept on weekends and ate one meal a day, who kept all the nasty things from work immediately mentally accessible because she had to be faster and stronger and better and do three people’s work because one of them wouldn’t do her own and make work for two as a result. You have grounds, because they gave you the wrong kind of appointment, and asked irrelevant questions. You’re already thinking in contingencies, laying the groundwork, a paper trail, and preparing the forms. You’re already dissociated. They need you to appear sensible, reliable, non-threatening, so you will have to abandon everything you’ve done to reassert your individual identity, go back to looking like a girl, because people think certain ways when they see a girl, and you have to appear like a girl who is stronger than a man, because that’s what the environment requires. You will have to fight and not cry, and you know delegating to another lawyer will not help, because when they lie to you and act without your permission, you will have no recourse. The only way to get through this is to retain control. You can’t ask for help, because nobody can see you like this. You won’t be you.

You will win, but then you will have to make your point. You can’t break it all down and expect to build it back up again. That will be it. You already know how it ends.

 

I’m halfway down. I sent a carefully crafted complaint, packaged in a certain way, because it will prove that I tried to speak up, and it will function as proof, because there will be paperwork on the other side that I can ask for to correspond. I know this game. I lived it, and it nearly killed me the first time, the second time. Things come in threes; in comedy it’s because everyone expects it the fourth time.

 

My psychiatrist isn’t back for nine days. I was meant to know his schedule, everywhere he practises, his best contact. I refused to give anything I knew of his routine. The man wanted to clarify one thing; he wouldn’t ask me. He can use the contact my psychiatrist gave him. It will give me time to prepare, to make everything perfect. Next Thursday, at 12:01am, I will have to click a button to say I am following a legal obligation I do not have and cannot comply with, because there is no other option, and I will fall asleep covered iin blood. I have a show at the end of the month and the only person I have who I am not related to who actually cares about me beyond being paid to do so expects me there and I cannot let him down. He will buy a ticket for my show, and be the only one who comes. It may not be enough.