disability, etc

mid twenties, autistic, mentally ill, epileptic; disabled. chronically awesome.

[ms-demeanor]

I made a comic about what it feels like (to me) to cope with having an invisible illness and the judgements and accusations that sometimes come with invisible illnesses.

I did it in green ‘cause that’s the color of the Celiac Awareness ribbon Celiac is one of the “imaginary” “all in your head” “stupid” “hypochondriac” invisible illnesses I live with.

So here. Be nice to people in general, because it’s the right thing to do, but if you can’t at least do that then please don’t be an asshole when someone tells you that they have Lupus or Celiac or Fibromyalgia or any of the other things that we live with every day that you can’t see on the surface.

Cheers.

[justthatcatyouknow-blog]

One of these little boxes. 

That's what I lose every time I have a seizure. 

A week feels like a very long time to be "under the weather" -- I can't do any studying for a week; if I go to classes, I won't remember anything a few hours afterwards. There's no point trying to do work on assignments because I'll just have to redo it again later when I'm better. I can't teach my classes for a week, because I'm too out of it to be able to properly plan content or answer my students' questions meaningfully. 

A week feels like forever, and yet... it's just one of these little boxes. I've had thousands of little boxes so far, and I have so many more left in my life. So I've just lost another box worth of my life. I mean, my life is painfully finite, and I may not even get to have as many boxes as on this page in my life; but I'll have as many as I get, and one out of many isn't the end of the world. 

One more box worth of my life, and then I'll be back on my game. 

600,000 seconds. 

I can wait.

[written Wednesday September 24th, 2014, published here]

[justthatcatyouknow-blog]

dreams

The infinite possibilities each day holds should stagger the mind. The sheer number of experiences I could have is uncountable, breathtaking, and I'm sitting here refreshing my inbox. ~~~ Sometimes, I have these little moments of clarity. It's like, everything seems to be lined up perfectly, just for a moment. Everything is crystal clear, and I feel like I understand everything, all at once. And then it passes. Some people might say that it's a sign of mental illness -- I don't know what it's called, exactly, but it's up there on every bipolar screening test: "Do things ever feel vivid or crystal clear?" ~~~ We live trapped in loops, reliving a few days over and over, and we envision only a handful of paths laid out ahead of us. We see the same things each day,  we respond the same way,     we think the same thoughts,         each day a slight variation on the last,            every moment smoothly following the gentle curves of societal norms. We act like if we just get through today, tomorrow our dreams will come back to us. ~~~ The world hurts. I don't know how everybody else doesn't feel it; and for a while, I never realised that they didn't. ~~~ Imagine if someone you love died, today. Imagine how distraught you'd be, how broken. How many people would be devastated, how deeply it would cut through your lives - Today, 150,000 people have died, or will die. That's all of the pain I would feel if someone I loved died, only hundred and fiftythousand times over. Every single day. ~~~ And no, I don't have all the answers. I don't know how to jolt myself into seeing what each moment could become. But I do know one thing: ~~~ The world hurts. I was discussing with someone today about cognitive load, in particularly how it relates to neurodivergent people -- your brain is constantly working to process out extraneous stimulae, like the sound of the fan whirring in the background that's keeping you from melting, or the feeling of your clothes on your skin, or the sound of your heartbeat rushing in your ears. Except, for someone with some form of processing disorder[0], your brain isn't so good at filtering out all of that stuff, and so you have to, on some level, consciously deal with it. And that takes mental effort, and so there's less of it to divide up amongst the other important things. Often, people say that they have no idea how I can deal with that all of the time, every moment of every day. For a long time, I didn't even realise other people didn't. ~~~ The solution doesn't involve watering down my every little idea and creative impulse for the sake of some day easing my fit into a mold. It doesn't involve tempering my life to better fit someone's expectations. ~~~ Every day the air-conditioning turns off at 6:14pm. If you point this out to people, they'll go "oh, yeah", as if they'd noticed, but only in the back of their mind somewhere, never to be consciously thought of unless you bring it up. ~~~ It doesn't involve constantly holding back for fear of shaking things up. ~~~ I'm not like everyone else, in some ways. I am the product of my experiences; moments strung together into a cohesive whole. My life is made of little boxes. What I choose to do with them makes me me -- what you choose to do with yours makes you you. I'm just like everyone else: human. ~~~ This is very important, so I want to say it as clearly as I can: FUCK. THAT. SHIT. ~~~ -- Dreams [xkcd] [0]: processing disorder, as in "auditory processing disorder", "sensory processing disorder", "visual processing disorder".

[justthatcatyouknow-blog]

the hardest part is letting go

One of the hardest parts of being "unwell", for me, in general, is how variable my life can be. [title related: it's from a great song that's stuck in my head, for whatever reasons.] In terms of energy, whether it's mental or physical or social or something else; the best analogy I've found so far is spoon theory. In a nutshell, most "healthy" people have a near infinite amount of energy and resources to spend each day however they choose. However, for many of us, we have a finite amount of energy - "spoons" - to do things with each day. So, you can cook breakfast, and have a shower, and eat, and do the dishes; but then you've used up most of that day's "spoons", and you can't do much else for the rest of the day; for example. It's a great analogy, and it fits my life well a lot of the time: if I push myself too hard, I eventually reach a point at which I absolutely cannot go on any longer without risk of serious consequences. Which is true of most people, I'm sure; but my limits and capabilities are often surprising to other people. Most people can't see or understand how spending a day at work interacting with people can mean that I can't bear to talk to anyone after I get home from work; or how spending all day sitting at a desk can mean by mid afternoon I want to curl up in bed and rest for a while. Spoon theory makes sense, and is something many of my friends understand; and it fits well. I know roughly how many spoons I have, which doesn't usually change vastly from day-to-day (although it waxes and wanes over time; just not suddenly), unless I push myself or get too stressed. It's something I can deal with, and understanding my limits is a very useful thing for me. But, that's not the hard thing. The thing I find harder is the unexpected sudden changes in capability. On a small scale, it's being struck down with a migraine and having to curl up for the rest of the day, regardless of what other plans I had and how important they were. But that's something I can anticipate, and plan around -- if I have an x% chance of losing n days over the next week, then I need to add on a buffer of y days on top of how long I expect this task to take -- or something.1 It's the longer term version of this that's a lot more difficult to deal with. Depressive episodes, where it's a struggle to do anything more than get out of bed and shower and maybe even leave my bedroom. Or, adjusting medications and being too sedated to get up and go out, because I'll probably fall over, or get arrested for being "drunk" in public, or something. The worst part about this is when I look at how much I've achieved that day, and compare it to how much I can achieve "normally" (aka, at my peak). When you're someone who usually works 15 hours a week, and studies full time, and who's active in the community and who cooks and cleans and exercises and is generally pretty productive and ambitious... looking back on your day and realising it's 7pm and you haven't even gotten dressed yet, is pretty damn depressing. I mean, even on my "bad days", usually, I can still manage to get up, eat something, and maybe even wander to the computer science building to hang out with people, or head to work to get lunch and stare blankly at my screen for an hour before feeling like I've "made an effort" and I can go home again. I don't really do very well with sitting around, moping about how hard my life is or how much everything sucks. If I'm feeling bad about things, and I sit around feeling upset that life is stupid and the world is unfair... I just end up feeling worse; and I'm lucky enough that I can anticipate this in advance and make sure I do something with my day. Which is a large part of why I've been feeling so helpless and frustrated with this recent medication change. I'm on a stopgap medication for a week as a desperate attempt to stop the recent increase in seizures; and we're increasing my usual med in the meantime, to hopefully work in a more long term way. The former is so sedating, at least physically, that I can't get up a few hours after taking it, unless I want to fall over; and the latter has this great side effect of making me really tired, but unable to actually fall asleep, which has led to a lot of really frustrating sleepless nights. Understandably, this means I haven't been able to do much of anything. I don't think I could even get on a bus to get to work, let alone actually achieve anything; it's been enough of a struggle just finding and eating food. I have a few potentially productive hours from around 4 or 5pm until about 8pm; but if I've spent the eight hours prior to that being stuck in bed lest I fall over, it's pretty hard to motivate myself to get up and do anything. "Well, self, I know we've just spent eight hours lying in bed feeling progessively more helpless, but hey, maybe we can get up without falling over now!" -- it doesn't really inspire you to go out and run a marathon or anything. And that's one of the biggest problems I find with motivation. It takes a lot of continual effort to be able to motivate myself to do anything. Once I'm motivated and I'm doing things, I'm fine; but actually getting myself to start is pretty difficult. I usually get around this by stumbling out of bed in the mornings, and emerging from the shower feeling capable of starting the day -- I'm in the routine of getting up once I wake up, and following a routine is easier than actually making a decision to do something. But, yeah, when I can't do anything until mid afternoon, it's pretty hard to overcome eight hours of doing nothing. I'm still not entirely sure what I'm trying to say here, or what I'm trying to get out of this post. Venting frustration, I guess; supposedly I'm doing okay with this writing thing, and it's helping people who aren't in this sort of situation to get it, a little bit... so if I'm still achieving that, then that's probably a good thing. I just.... this is hard. I am accustomed to doing a lot of things, and achieving a lot of things, and pushing myself a reasonable way towards my limits every day. It's hard enough coping when I'm not able to achieve things as a coping technique; it's harder still when the limit is purely physical, and my mind sits there going "okay okay so can we do things now? let's go shopping! let's wash those dishes! let's cook something!"; it's a bit like telling a child that they can't have candy, or something. I know that this is only temporary, probably; I've had to redefine normal a number of times throughout my life to have more realistic expectations of myself. That's difficult, but at least then I know what to expect. Having a few days or weeks of significant impairment and knowing that things will definitely improve someday doesn't actually help now. But, that's okay. Sometimes things are tough. Sometimes you're completely powerless to improve a sucky situation. Even knowing that it won't last forever doesn't make the in-between times any easier. It is okay, although rather unpleasant, for life to just plain suck sometimes. It's just a matter of coping until then; whatever that takes. 1 Of course, even when I take into account the fact that things will take longer than I expect, they still take longer than I expect. ↩

[justthatcatyouknow-blog]

anterograde amnesia

You'd think that the worst part of a seizure is the convulsion. Your body writhes, contorts; you fall to the ground. Your limbs hit things, or your head hits the ground. Maybe you get injured. Whatever. Or maybe the worst part of the seizure is the aura. Terrifying hallucinations; senses crossing over; "like being on acid, but without the fun parts". Having to deal with your reality warping around you, while you have no control; knowing that the worst is yet to come. ~~~ I keep going to write a blog post, but I can't string my thoughts together for long enough to work out what I want to say; what I'm trying to say. ~~~ Losing control is never an easy thing to deal with. Those brave enough to experiment with it turn to skydiving, or hallucinogens, or risk-taking. Losing control, or maybe never having any control to begin with. But having a seizure is like nothing else -- you can't even control the fact that you enter into a situation which you have no control over. It just hits you suddenly: one minute you're peering into the innards of a router, exploring each system inside and trying to see how they work together as a cohesive whole. The next, you're hit with a wave of deja vu so strong you pause in the middle of a sentence, and it takes every effort you have, every little bit of willpower, to struggle over to your bed to lie down before the universe falls to pieces. ~~~ I keep writing notes to myself, as I think of things that I want to write here; and coming back to them minutes later having no idea what I wanted to say. ~~~ There's not many good things to be said for convulsions, or auras, except maybe for the fact that they're nowhere near as bad as the aftermath. Waking up confused, sure, but that's just the beginning. Recovering to the point where you can stand up, and talk; but you still can't remember what year it is. ~~~ I have to keep reading over what I've written so far, so I can remember what I'm even trying to write about; so I can remember what I'm trying to say. ~~~ The immediate period after a seizure is pretty sucky, but at least you're still mostly unaware of what's going on. Your processing is very limited; maybe you're only aware of the fact that you're in pain; maybe you notice that there are people around and don't they look funny. If everything hurts too much, you can always slip back into unconsciousness, knowing that you'll know slightly more when you next wake up. ~~~ I keep looking for things, and not knowing how to find them. Or maybe I find them, and I forget that I've found them, and keep looking for them. ~~~ Your brain drops everything on the floor, again. You probably even remember that this is a side effect of your medication -- stack frame corruption; backtrace stopped. ~~~ I keep running into objects from earlier in the day, and suddenly remembering what I used them for; what memory was attached to them that I had otherwise lost. ~~~ "Anterograde amnesia" pops into your mind, as your brain grasps at straws, trying to understand what's going on. You can't remember where you put your phone, or whether you've even seen it today; but you can know that you usually have your phone and probabilistically it's probably around somewhere. Maybe you can even remember that you put your phone somewhere, sometime recently. ~~~ And then I remember that I've remembered a whole bunch of other things today, similarly, but I no longer remember what those things actually were; more memories lost into the void. ~~~ You wonder if you'll ever be able to remember things again. ~~~ I'm still not entirely sure whether I have a point; whether I ever had a point, or if I was just driven by a need to create some sort of meaning here. ~~~ You remember the time the anterograde amnesia lasted for weeks after a seizure. You don't remember the seizure, or much about that time period; except for a few snapshots of finding yourself somewhere and not knowing how you got there; or of the systems of writing notes for yourself you used to keep track of things. ~~~ I lost my phone, earlier. I wanted to take a photo of something, and so I looked for my phone. I couldn't remember where I'd already looked, and it never crossed my mind that I could call it from the internet or from my watch; and I couldn't find it anywhere, until I found it on the floor. ~~~ Anterograde amnesia is pretty interesting -- you can remember that you took your watch off earlier, but not where you put it. Or, maybe you're just noticing that your watch isn't on your wrist, and creating the illusion of remembering that you took it off from your observations. You ~~~ I ~~~~~ Your head hurts. ~~~ My head hurts.

[justthatcatyouknow-blog]

we do what we must, because we can

Another day, another injury. Or so it feels, at least. I have epilepsy, which sucks; not-very-well-controlled epilepsy, which sucks even harder. During my second to last seizure, I dlslocated my shoulder, which I highly advise against doing -- it's really not a good life choice. During my last seizure, it happened again, and it hurts even more than the first time. I've been unable to use it to do anything that involves moving my shoulder, or leaving my shoulder still but doing things which strain it (like carrying heavy things); which sucks, I guess -- it'd be nice if I hadn't had to rely on other people to help with things like tying my shoelaces (until I found my shoelace-free shoes) or opening doors or whatnot; and it hurts pretty badly, and all of the doctors I have to see take up a lot of time that could be better spent working. But it's not the end of the world? Pain sucks, but it's not the worst thing that can happen to a person. I often hear people talking about euthanasia, specifically about how if they had to be in physical pain for the rest of their life, they'd rather die than keep living. And while I fully support the right for any mentally sound and mature-enough person to have the right to choose whether they get to live or die; I can think of a lot of things that are a lot worse than being in pain for the rest of one's life. I've spent an unfortunately large amount of my life thus far in various kinds of pain, and it doesn't seem like that's likely to stop any time soon. My shoulder currently hurts more than anything else in my body, and it will probably continue to do so for quite some time, unless I have another postictal headache, because nothing much ever helps those. But that's hardly the worst thing that could happen to me. I saw a shoulder specialist surgeon today, to assess my shoulder post-dislocations, who informed me that I'll probably continue to dislocate my shoulder every time I have a seizure. Which also sucks. He said that if it still dislocates randomly once my seizures are under control, that surgery would probably be necessary to stop it from doing that; but that if I had a seizure after the surgery, it'd get ripped apart again and would effectively undo the surgery, so there's not a whole lot they can do. And, yeah, that sucks. Dislocating my shoulder was, hm, top 20 most painful experiences ever? The second more than the first, because the first happened when I was asleep, and I popped it back in and went back to sleep afterwards. But it's still not the end of the world. The surgeon also said that I'll probably dislocate my shoulder again if I reach up above me, or reach up and then back further. Which has pretty negative implications for if I ever wanted to be a manual laborer (hopefully not a situation I'll ever have to encounter), or if I want to put things into a washing machine that's way too tall for me (which might well happen, but I can probably work around that), or if I ever want to play basketball (not something I anticipate ever wanting to do, but I guess that's possible?), and so on. So, yeah, that sucks too. But the physical side of things is nowhere near as scary as the mental side. Epilepsy medication sucks. The one I'm on currently is the nicest one I've ever been on, in the sense that it has positive effects (literally -- I feel so much more positive since I've been on it), and the side effects are nowhere near as bad as they have been on some things, although still not great (the only one that's really bothering me is the fact that I have "the stupids", in which my verbal processing parts are even screwier than normal, and I have more nominal aphasia than normal [although heaps less than with topiramate]; sometimes my brain just drops everything on the floor and I forget what I was even thinking about, and have to start that thought train from scratch again; and generally my thinking is a bit slower and my memory a bit more screwy than normal). I don't think any "normal" person would choose to be on this medication for no reason; but I'm pretty sure it's better than the alternative of having a whole lot more seizures until one day my arms fall off and my brain explodes and a giant crevice opens up in the earth underneath me and swallows me whole 1. My biggest concern is how this will influence my future and career prospects, since it seems fairly probable that I'm going to be working in high-intellectual-intensity fields for the foreseeable future; where constantly being sick makes it pretty hard to get work done, of course; but even just chronically being slightly-less-intelligent-because-side-effects could cause problems, or even stop me getting hired in the first place. Of course, even that wouldn't be the end of the world -- the end of one particular world, in which I graduate, get my degree, and go and work for one of the world's top tech companies until I find something better to do. But even then, there are other possible things I can do in the future, and there's a whole world of things between "work at Google/etc" and "have no future potential at all, and thus crawl into a hole and die". So even that's not the end of the world. Sure, I'm going to have to relearn how to succeed at tech interviews given my newly acquired bundle of impairments; and I'm going to have to make sure I take notes during any important meeting or of things I'm thinking about during work, but that's not impossible [and has led to people thinking I have a good work ethic, rather than wondering wtf I'm wasting time taking notes for]. And, maybe things suck. Actually, no, things do suck. There are a lot of really negative things going on for me right now, and I'm really not very happy about the fact that I've got another bundle of impairments to add to my ever-growing stack of issues. But just because things suck, doesn't mean there's no redeeming factors. My shoulder will heal, to some extent, and the pain will reduce. I'll learn coping mechanisms for my brain-stupids, and eventually they'll become second nature, just like all the other coping mechanisms I use for all my other brain-impairments [if you're reading this, and you know me, and you can't think of a bunch of brain-impairments I have and/or any coping mechanisms I do, then, good, that means they're working]. Everyone seems to comment on how it's so impressive that I can stay so optimistic [and/or resilient] in the face of so many difficulties. It's not like I never get upset: certainly, I am usually upset for a while after something bad happens, until I manage to settle my brain and conjure up some more hope. And, certainly, I have times when I'm fixated on how bad everything seems, or how unfair life is, or how much I really just wish none of this stuff had ever happened, because everyone else's lives seem so easy in comparison, sometimes. But, most of the time, I am pretty okay. I have to consciously go through the process of thinking about things in a positive light [like I've been doing here], but once that's done, I can see how to move forward, and why it's so important. And most importantly: I am still alive. There's still more room for improvement, and growth, and success, and learning. And, at the end of the day, that's what really matters.

[justthatcatyouknow-blog]

some thoughts on motivation

Sometimes I am motivated. Most of the time I am not. It's very hard to consciously transition between the two states, or to observe in the moment what I should be doing differently.

Sometimes when I am unmotivated, I can force myself to do things regardless. Often this leads to half-hearted attempts at tasks, such as wandering into the kitchen, staring at the pile of dishes, maybe washing one or two, then leaving. In these states, I feel "foggy" or "zoned out", and I don't manage to make it into the "motivated" mindset. Hypothesis: mindfulness, and/or goal-directed-thinking (for lack of a better phrase) may help with this state. Consciously stating to myself "I am now going to go and wash the dishes", and then "I am washing dishes".

Often I find myself more able to be motivated when I am in a physical location where I usually do work. Also, prolonged transitions between states (such as going on a bus ride between home and work/uni) help me to transition between mindsets. This is difficult given my current living situation: I don't need to catch any public transport to get to classes; and the desk in my room is in my room, where I spend a lot of time doing things other than work. However, there are common areas in my building which I can presumably use for getting work done, especially if that's writing-stuff-on-my-laptop work, rather than doing-my-dishes-and-tidying-my-desk work.

When I have consciously decided to achieve something, then I will get it done no matter what else is going on. When I haven't convinced myself that something is necessary, it won't happen. This means I'm really good at doing assignments at the last possible minute, and very bad at working on them ahead of time, no matter how badly I may want to want to work on them. I'm not entirely sure how to overcome this obstacle, and I suspect if I mastered this, I would be very effective.

It's easy to assume that stimulants [disclaimer: I have ADHD and a valid prescription for medication, which I take as prescribed] will help me focus/concentrate, and that they will motivate me. In reality, they do little to motivate me (although their absence makes it even harder to do work); and they don't really make me better able to start doing something. They're really only good at helping me continue to do something I've already started; and once I'm in that state, I want to keep on working on whatever I'm working on.

This is problematic, because it means I associate that feeling of "woohoo I want to keep working on this" with "hey, I took stimulants and this happened"; which means that I often expect that I can take stimulants and feel like I want to achieve things, when in practice taking stimulants will just make me want to have a nap, or focus really hard on researching something not-important.

Another problem I have is that I feel guilty about starting/doing fun things when I have other things which are more important to do. This leads to a lot of time wasted doing boring things like refreshing my Facebook feed over and over, rather than doing something I really want to be doing, like playing video games or reading for fun or resting; or something I need to be doing, like chores or assignments or work or whatnot. This means that by the time the end of the day comes along, I have achieved maybe one or two things out of twenty of my "important things to do today"; and I've spent most of the day feeling anxious about the fact that I'm unable to force myself to achieve more things, rather than actually achieving things, or having fun.

I also recently returned from my Christmas break to visit family, and I found my holiday very relaxing and enjoyable. I've observed that each day I had a small handful of things to achieve: get up, get out of bed, get ready for the day; work on some important things around the house; make the most of my time with my family. Any time I had free after doing all of those things, or while waiting for circumstances to allow me to continue doing those things, could be spent on enjoyable tasks like watching TV, reading, video games, etc.

This is a sharp contrast to my "normal" life, where I have about fifty things that are really important and building up and up and I really need to do them ASAP or by last week or last month. And so even when I achieve something significant or a number of things off my TODO list, I still have this overwhelming feeling of "oh god, I need to achieve more things, I have no time to do them, aaahhhhhh", which leads to stress levels climbing, and less time spent doing enjoyable things, as well as being less able to feel good about whatever I do achieve.

I've found that the common approach to overcoming this problem, of timetabling things and working out a schedule for each day or week or whatever; doesn't work very well for me, as the unexpected will always happen, and I'll be too unwell to achieve things for a few days, or I'll have a slump of amotivation where I can hardly force myself to get out of bed, let alone work on things; and so I'll get behind at whatever I had planned to do, and then I'll have the same problem as before, only compounded.

I think a more flexible approach would be to have an up-to-date list of everything that needs doing, and to periodically (each day?) look through everything that needs doing, and work out what is feasable to achieve today; and to work out what fun things I want to do today, and how I'm going to achieve those; and then to do my best to knock off a few of the things that I can achieve, while making sure I let myself have some time to do enjoyable things.

So, then, some things to try:

Mindfulness / being conscious of what I'm trying to achieve, when attempting "boring" tasks [eg chores]

Find physical locations where I can get specific tasks done, or at least ways to transition consciously between "on" and "off" states

Find reasons why achieving things on my TODO list are important, and focus on those

Don't expect stimulants to be a magic solution: they'll help maintain focus, but not create focus or motivation

Take time to do enjoyable things, even when there's a zillion things that need doing by last week

Have an up to date, centralised list of absolutely everything that needs doing; periodically review it and work out what is feasible to achieve today, and work on that; rather than scheduling fixed blocks of time which falls to pieces.

[justthatcatyouknow-blog]

interesting experiences

I watched an interesting TED talk today. Jill Bolte Taylor's stroke of insight A neuroscientist has a stroke, and has this interesting experience of the stroke slowly progressing and her cognitive function slowly slipping away, and just how weird everything is. [CW below this point: talk of experiences of psychosis and mental illness; seizures] It's especially interesting to me, as someone who has been constantly plagued with "weirdness". I don't remember much of being younger than 11 or so; I do remember around that age having an internal monologue for the first time, and being pretty freaked out, because what was this strange talking that was inside my head, did it mean I was going crazy? I often refer to myself at that age as "becoming sentient". I was also diagnosed with depression around that age, and during the depths of that depression was the earliest that I can remember having psychotic symptoms. I remember being terrified by the strange thoughts and feelings I was having; the way my posters stared at me, the way I heard unfriendly voices saying horrible things; and being terrified that there was something wrong with me, or I was going crazy, or whatever. I've had migraines since around then, as well; but even before that, I would get spells of vertigo and "Alice in Wonderland syndrome". Everything would distort, and warp; I would notice as I was falling asleep that everything would spin around, and if I closed my eyes, it felt like my bed was spinning around in circles, and slowly rising up into space. I was convinced that if I could just keep my eyes closed for long enough, eventually I would take off through the ceiling, and transcend to some magical other world. It would always become too overwhelming, though, and I would open my eyes, and see that I was lying in my bed, which was sitting on the floor of my bedroom, and that I hadn't actually moved. I had my first manic episode, at least that I can firmly identify as being so, when I was around 18. It's still pretty difficult to describe: I really wasn't myself, and the part of me that watches over everything I do to make sure I'm not being an idiot was silent for, weeks? months? I did a lot of stupid things, and it got to the point where I was hallucinating terrifying things, so I went and got help. It was also my first experience with antipsychotics, which was an experience in itself; although the one I was given was extremely sedating, and I did not enjoy it. I had my first seizure around that age, as well. I don't remember much about it; I first had a seizure with a very obvious aura a year later, and that was a bit terrifying. I wasn't really sure what was going on, but everything felt far too intense and overwhelming, and so I was resting my head in my arms, on the desk in the classroom that I was in. Everything got a lot more weird, and eventually it peaked and overwhelmed my mind. I knew that something *really bad* was about to happen, but I couldn't move or speak. I woke up on the floor, groggy and confused, and still unable to speak -- the first of many times that this would happen to me. When I was a lot younger, probably around my early teenage years, I was (still) really interested in pharmacology, and so I read a lot about recreational drugs. Hallucinogens were especially interesting to me, and I devoured as many "trip reports" as I could, reading about the various experiences that people had had. They described the feelings of intenseness; seeing things shift out of the corners of their eyes; sometimes things would warp right in front of them. Colors were brighter, emotions were intensified. But, this confused me a little bit -- since I experienced this frequently, without taking hallucinogens. I was around, oh, nineteen or twenty when I was first prescribed non-terrible antipsychotics. It took me a week or two to realise -- reality had been "plain", "boring" even, ever since I'd started taking them. I no longer felt like the floor was going to crack open in front of me and swallow me whole whenever I walked around campus. Things stopped feeling quite so overwhelming; I didn't see things moving out of the corner of my eye any more. I slowly adjusted to seeing "everyone else's reality"; and I felt a bit like something was missing. I was, and had always been, this person who was different, "special" even; and it felt like everything that had made me unique was gone. Although I felt like something was now missing, I also felt a lot more.. capable? functional? I actually felt like someone who would be capable of getting up and going to work/uni every day. This was my first experience of stability, and although I missed my old life, I knew I had a lot more options when stable. I guess what I'm trying to say is -- my experience often seems to have been vastly different to that of most other people I've spoken to. These days, when I have a seizure aura, and everything warps and distorts around me, I'm scared that I'll have a seizure, of course, because there's nothing fun about waking up with a broken bone or a concussion; but I guess my thoughts are more like "oh, here we go again; this is pretty weird, I guess", rather than "what the fuck is happening why is reality changed". I don't really experience that shock and surprise at my reality being ripped away from me, because it's something that I've persistently experienced for about as long as I've been sentient. Life sure is interesting.

[justthatcatyouknow-blog]

epilepsy sucks

[CW: seizures, death, depressing stuff] Imagine waking up one day, and having no idea who you were, or where you were. Everything is fuzzy. Your head hurts. Imagine you're someone who defines yourself and your self worth by your intelligence and your ability to be useful. Now imagine that you wake up one day, and you can't think straight, or add numbers together, or form coherent thoughts. Taking it a few steps further: imagine you're waking up on the floor; in a lot of pain. If you're lucky, it's just your head that hurts. Unlucky, and you've fallen off something and broken your arm, or your shoulder, or your neck. As you wake up, you start to panic. How did you get here? Why are you lying on the floor? Why can't you recognise these people staring at you -- and why are there people staring at you? This isn't your bed; or at least, you don't think it is. You can barely even remember what a bed is. You try to roll over to escape it all, but everything is too heavy. You let out a slight groan, and fall asleep again. You wake up again. Someone is shaking you, asking "Are you okay? Can you hear me?". You try to open your eyes, but that makes the already-awful pain in your head get worse, so you don't try very hard. The person shaking you sounds pretty insistent, so you try to tell them you're fine; go away. It comes out as a groan. You fall asleep again. Over the next while, you begin to wake up. Your head feels like it's going to explode. Your muscles ache like you ran a marathon, or five. Eventually, you can open your eyes. Maybe you recognise the people in front of you, maybe you don't. Maybe they tell you who they are, and you accept that you probably know them, but you still can't quite work it out. You close your eyes again, roll over, and go back to sleep. After a while, you're awake enough to sit up. Everything feels disjointed. You have a vague recollection of the fact that you've been lying on the floor for a while, although you couldn't say how long or what's been going on. Your watch chirps at you, and you are surprised to see that hours have passed since you last knew what time it was. As your memory comes back to you, you start to realise what "It's okay; you had another seizure" actually means. Oh shit. I had another seizure. And I'm at work. That means people saw it happen. Why did I even come to work today? That makes this, what, the third one this week.Fuck. Is this just going to keep happening forever? Why have things been this bad lately? As you start to worry, the darkness creeps in. Some people feel great as they emerge from a seizure's amnesia: "post-ictal bliss", it's called. You, on the other hand, feel like everything that's wrong with the world is condensed into your being, right now, and maybe nothing will ever be okay again. Maybe there is no hope. Maybe this will keep happening forever, until one day you fall awkwardly and break your neck and die. Maybe one day you'll have a seizure in your sleep, and nobody will be there to make sure the pillows aren't suffocating you. Maybe you'll just keep on having seizures so frequently that you can't hold down a job, or finish your degree, or ever make anything of yourself. Or, maybe things will be okay -- but you find that very hard to believe just at the moment. In a few days, maybe a week, you'll be back to "normal" -- you'll be able to think straight, go to work, even feel okay about life, sometimes. But you can't ever quite escape the fear that this will happen again. Fuck epilepsy.

[justthatcatyouknow-blog]

Disabilities

[written a few months ago] Today is the "international day of people with disability". Disabilities "suck" - I'm sure my life would be a lot easier without everything that stands in my way. I have no aversion to curing something like epilepsy. But a lot of things that are classed as disabilities - things like autism - are such an ingrained part of who I am, that I would be an entirely different person without them. Since most people agree that I'm pretty awesome as is, I don't really want to be, for example, not autistic, even though it makes my life more difficult. Anyway, I think it's important that we can talk about these things. There are far too many of us for you to just forget about us; it's entirely unfair to live in a world where you can't get by because things just don't work for you; which is why we build wheelchair ramps and have Braille signs. I think we need to go even further though, in making the world universally accessible to everyone, not just the people where it's easy to do that. We need to try our hardest to overcome our unconscious biases, and to treat everyone with respect and compassion. And we need to have these conversations. It's okay to speak up if you have a problem. It's okay to talk about your experiences. You are okay as you are, no matter who you are or what makes you different.