The relationship between chronic pain and abnormal sensory processing

People don't often understand chronic pain - they think they do, they've dealt with pain, but generalizing from an ache and pain here or a headache there to pain being a constant part of your life, that it partially shapes your life. This pain isn't just there, its constantly there, and its not only constantly there, its what determines what life you're living.

The thing about this pain - this pain that is constantly there - or at least one thing, is that you can't stop for it. One of the privileges of not having chronic pain is the ability to stop because of pain, and it being the proper thing to do. When you don't have chronic pain, its not only acceptable, it is appropriate and right to stop when you've pushed yourself so far that you're hurting. It is wrong to keep going when you've caused pain when you can set it aside and finish it tomorrow, unless its extreme circumstances.

When there's chronic pain, you don't have this luxury. You don't have the option of stopping because of pain. You don't have the option of saying it hurts today I'll do this tomorrow, because it hurts tomorrow too, and the day after that, and so on. There are questions of trying to manage pain, and trying to not overdo it, but pain is no longer an excuse, pain is no longer a reason to stop going today unless the pain will be unmanageable tomorrow, pain is no longer a reason you can say that you can't do something now.

When someone has a bad headache they can take painkillers and say they can't do the grocery shopping today. When someone with chronic pain has to do the grocery shopping, they need to do the shopping. They might rearrange what they are picking up so that they're walking the shortest path, or such that they're not carrying any heavy items, but they still need to eat. Pain is no longer a reason to put off the shopping.

So, when it comes to abnormal sensory processing, the same types of things hold. Except that most people don't ever even get the headaches in the first place. Most people don't even get the equivalents of twinges of pain. They don't need to say that things are too much, they don't need to say they can't cope with things, they don't need to find to ways to cope with things that are going on around them. They never feel pain, except they never get any of the downsides of not feeling pain.

And then there are some people who have to cope with headaches and aches and pains. There are people who if you push them to far, or if they push themselves too far will respond with pain. They will sometimes wake up in pain without a good reason, and will need to react with pain killer equivalents and saying that today they can't do the grocery shopping. We need to be accepting of this. We need to let these people do what they need. These people are the equivalents of people who get headaches in a world of people without pain receptors.

Except, there's a level above that as well. There are the people with chronic pain. There are the people who no longer can say no, I can't do that today. There are the people who have to just keep going even though it hurts, even though the world is at constant war with their body and their body is at constant war with itself. They no longer have the option to say its too much, because its always too much, or that its not enough, because its never enough, or that its not right, because its never right. They always have to fight to make it as best they can, and as best they can is always still pain, and always still more than most people deal with, or can ever imagine dealing with.

These things affect people, and the lack of understand can too. Treating people right matters a whole lot. Remember that people can't always say no. Remember that not saying no doesn't make it easy. Remember that these people who are saying that their bodies are processing things differently mean it - when they're saying that it hurts and they can't take it today that they mean it, and remember that those of us who no longer can say that and who have to just try to grin it and bear it and the chronic pain it causes have to do that too. Please.

The gamble of how to not hurt people

Hurting people, and guilt, is generally a really important theme when discussing empathy, however empathy is defined. When is it worth doing something that will hurt someone else is an interesting question for people to discuss frequently, to determine how much pain is too much and where values lie.

Or, on the other hand, the guilt of doing that, of hurting them, how does it affect you? Disproportional responses occur, in both directions, people who feel guilt too much, and those who feel guilt too little. They're interesting for people to discuss, stories that are talked about.

But me, I don't know what to do. I don't want to hurt people. I don't know how to not. I feel guilty, because I didn't know and didn't make that decision. It is too strong of a response, because its unpredictable. I didn't know it would happen.

Because I cannot understand what hurts others and what doesn't, I cannot understand if an action I would do might hurt someone else. I cannot know if something like saying 'I don't like that gift' will be something that will hurt someone badly. And because I don't know, I won't do it. If I knew it wouldn't, then I'd be fine, but I don't know. (I mean I can say now that in most cases it'd probably be fine, but saying it now and being able to understand it in real time are not the same; understanding in real time is far more difficult). So, I'll always take the not understanding in the way that's least risky, in terms of hurting others. It's the safest move for me.

Because they can say "you won't hurt people", but I do and I don't know why or how. People do react like I've hurt them, and they do it unpredictably, and they act like what I've done is terrible. And I don't know what I've done wrong. And when I don't know if its them or me, and I don't know what to do and what not to do, when all I know is that there are things that hurt people, and that some of the things that make people uncomfortable I can't help but do sometimes, and if I don't do always you're spending a huge amount of your energy just on that...

Then, what would you do? I always have a gamble, every action is a gamble. Will this one be one that bothers people or not? Because I don't actually know. Because I don't actually know those rules of what hurts and what doesn't. There seem to be unspoken rules, that people know, that mean certain things are allowed in certain situations and not in others, and certain things are never allowed, and I don't know them. All I know is that I don't want to hurt people.

So instead I take those least risky moves. Because if I need to gamble, I'll play it safe. Because even that's a gamble, and even that fails sometimes.

And doing that, that's not not acting not true to myself. That's not knowing what to do. It's not saying "I'd rather do A, but I'll do B instead". It's simply not knowing. And wanting to not hurt, because I hurt when I hurt someone else. I feel guilty, and I hurt because they hurt, and I don't know what will happen.

So I do what I can for me when I can. And when I don't know, then I do what I can to not hurt others.

Even if sometimes that means that I don't know what I'm doing at all.

Because what I'm doing here is living without knowledge when others have it. But the gambling game when they are playing a different sort seems to be working out well enough so far.

What is autism?

What is autism?

Living a life that others don't understand. Being told that you aren't "really disabled" because of being verbal. And at the same time being told that you are not good enough, that you need to be normal, that you need to act how they do. Struggling alone. Doing the best you can to be the best you can. And not being acknowledged, because people want something else.

What is autism?

Autism is being able to identify individual learning styles quickly because we cannot understanding people intuitively, and need to analyse every thing actively. Learning styles are no different than attempting to figure out anything else about the person.

Autism is needing to say that you can't do something, and not knowing when to, or how to, and if it gets through that to actually saying something, then not actually being listened to.

Autism is overwhelming joy with something as simple as a toy made for a 2 year old. Simplicity is not a thing to overlook or look down on.

Autism is not understanding the world around you, and needing to make sense of it; not always being aware of everything, or being aware of too much.

Autism is learning about things in depth, taking in all the information about subjects and being able to call it up any time its relevant.

Autism is being told that we don't live past 18. That autism is only for children. That we don't exist.

Autism is saying that typing is communication, handflapping is communication, and we'll fix that "we don't exist", we'll find our own way into the world, because we need to.

What is autism?

Simply us. And we're not broken.

Written for the "This is autism" flashblog

I look away

They tell you to look me in the eyes. I look away. I won't let you do it. I won't let you look into my eyes while answering my question, even if they think that looking into my eyes means you are paying attention to me.

I can't do that. I can't let you. My eyes are too personal, too mine. Real eye contact means too much and fake eye contact takes too much energy to spend on such an activity rather than what matters. Yes, I fake it for people, no I will not like this. Not when you are right in front of me. Not when it's so forced, not when it takes so much concentration. No, now I look away. I must for me.

And again, I can't do that. I can't let them do that to you. I can't let the view of normality be more important than your comfort. I can't let them force you when I know how uncomfortable eye contact is. I can't let someone say that looking in eyes is necessary to be listening when really, I know that isn't the case, and that it's just as likely, or really more likely, harder to listen and harder to think of you make eye contact. I can't let it be that looking normal is more important than being better, learning more, and actually managing to do things you otherwise wouldn't be able to do (in your own personal way). So I look away.

I have to look away, it's the only thing to do. Because sometimes, no matter how much they want to help they don't understand; and sometimes the action of an adult might make a point that the little things aren't what matter; and sometimes people are so busy thinking about their world that they don't see what it's like to be us.

So instead, I don't let myself get hurt. And at the same time, I hope that it helps you a little even if you are too young to understand now.

But what about those florescent lights?

I was going to make my post on time this year, I really was. But then things came up that were more important than writing a blog post. And now again, I vary between writing thousands of words because someone mentioned a topic that I wanted to reply to because they were wrong and not being able to pull up what I was going to write about on here. But, despite all that I'm going to write a post, even if its two days late, and even if there's a lot going on, and even if I don't remember what I was going to write about because so much is going on. And I'm going to make it meaningful.

Right now, what's meaningful to me and easy to talk about, sensory issues, so that is what I'll write about.

I don't hide from people that I'm on the spectrum and that I have bad sensory issues. It'd be rather hard to hide the sensory issues wearing blue glasses around, but still some people do overlook them and say that you can't notice. I question them sometimes, if I'm sitting sideways in a chair, wearing blue glasses, and stimming, but apparently this isn't enough to be visible sometimes.

Sensory issues can be invisible. Even more than other parts of autism. Social issues are visible if you're interacting with people. Communication issues, the same. Issues with change aren't immediately visible, but generally come up quickly, and are understood to be part of autism. Same with the other parts of RRBs. And well, stimming is usually visible, though apparently sometimes overlooked.

Sensory issues, when they're hypersensitivities at least (which within the HFA crowd seem to be the most common based on my experiences, though in SPD, hypersensitivities are actually less common than either hyposensitivities or seeking behaviors), are generally very internalized. The person reacts strongly, feels pain, doesn't process things properly, but doesn't show others very much. They don't scream out every time a florescent light turns on, but that doesn't change that the florescent light has an effect on them. It's an invisible reaction. Because others don't know. And others don't expect the environment could effect people so much.

Which leads to sensory issues being overlooked. We talk about communication. We talk about change. We talk about how many people are murdered by family members for being different. But, what about that simple florescent light?

Just for me? I hear those lights. They hurt. They feel like they're stabbing my brain with high frequency buzzing. They make me want to rip my ears off because it would hurt less than listening, and they jam my brain, because I have to listen through the buzzing. And try to concentrate through it. Eventually the buzzing might give me a migraine. A sudden noise of the sort might have other reactions, but lights are these constant offenders, like someone taking the static, turning it high frequency, putting it in headphones, and making you walk around wearing it so you're the only one who can hear it.

And then of course there's the vision part. They flicker. I don't know who gave people the idea that the flicker isn't visible to the human eye because its definitely visible. And both the flicker and the buzzing get worse as they age. A constant distraction of a fan flapping in front of your face, flip, flip, flip, flip, flip, because its flicker flicker flickering. And again, people deny it, because they don't see it. And because its so fast, again, not only is it distracting, its a slow buildup of too much getting too pain. Someone flicking lights on and off is irritating. Now, have that happen always in the room. It's normal. The eyes or the processing behind the eyes or something has to compensate though, and it doesn't so much like doing so (to put it not very scientifically), and eventually the eyes are tired, and hurt and tired, and the headache sets in.

And trying to process things with these - apparently my communication skills drop significantly as soon as you turn on a florescent light, and come back when you turn it off. Other sorts of processing is harder to test, but it generally gets messed up.

I know others who are more messed up by the lights. And others who are less messed up by the lights. I have other visual processing issues (headlights are one of my biggest ones), and many others in other senses. But, we don't need to look at dealing with everyone always. We have to look at doing what we can to make things better, when we can and how we can.

When that means in my bedroom, giving me LEDs, for when I can't use natural sunlight, that's a thing, because that's something that helps. And that's a thing that is worth mentioning even though it doesn't fix every visual processing issue I have, not to mention every sensory issue I have.

When that means, getting places to at least replace the bulbs earlier if they have to use florescents - that'd be a huge step.

But, right now, as I walk around, I'm in a way showing people that this matters, and when it comes up I explain. I'm wearing my tinted lenses, for myself, but doing it for myself is being open. And sometimes being open is enough to be saying a lot. Just wearing my lenses is enough for someone to say, why are there blue lenses? And that itself, is communicating to them about me, about autism, and about the importance of actually taking care of our sensory issues.

Wandering

I was hiking in the woods the other day, and the only thing I could think about was wandering. And what it feels like when you're wandering. And I can't really explain it, but I think it makes more sense to me now than it did before. At least, for one sort of wandering.

I think its about being, and existing, and about things just being right. And things don't matter anymore. And visual processing decreases because putting in the effort to process vision is just unnecessary. You just are. It's a sort of zen. Except, its a sort of zen that isn't necessarily safe and that others don't like because there's not control of it.

But its about just now, going and walking, and that being what to do, and you're there, you're with the world, the world is interesting, and society, society is gone for now, you don't have to hear the people, you don't have to deal with all of that, its okay, its a break, its just okay for now.

Whether its actually okay, that's a question, because wandering is dangerous. Going places because they're where to go, without thinking, and without processing, and not knowing where you are after, that can be a problem. Being drawn to water, can be incredibly dangerous. But, ignoring all of that and just going into the mental state, its that, its the getting rid of society, and just being okay for right now and just being okay walking and doing and being.

It's being at a lower level, where doing is doing, instead of being trapped in a mind where you have to analyse and figure out and predict and solve and react to everything and that's just hard and gets exhausting and to be too much. It's an escape, but its not running, its just letting go. It's not thinking, because thinking is what you always do. It's a break from thinking. It's a break from being external because that's what you have to be, and now instead you just are without the thought that needs to rule normal life.

And thoughts wander, and you wander, and you are. And its meditative. And you might not understand that you're not supposed to do things, because that's not what its about. Maybe you walk an extra mile down the wrong path. Maybe you forget that you're not supposed to go to the river on the other side of the highway and down a steep hill. Maybe you can't remember the moves to the dance even while you're dancing it. But, in that state, its saying, none of these things you struggle with so constantly matter, you just are. You just walk. You just are one with the world and on you go.

At least, that's what it feels like to me. I don't know how accurate this is to others. I've found that I can control this in me mostly, where I don't let go unless I'm in a safe place to do so, but if I don't get that, then my functioning is reduced. I didn't realize this until recently though.

Handflapping

I don't remember flapping as a child.

Of course. I also remember it being easier to communicate, and all signs point to me being one of those unusual people who as they go through adolescence and early adulthood, get more stereotypical autistic.

Either way, I don't remember flapping as a child. I might have handflapped some, but I don't remember doing so. I know that in high school and since then I've had stims, and I'd assume I did before then, but what they were wasn't necessarily hand flapping.

I hand flap now. Mostly when alone, but not only. It varies entirely on what's going on.

But, the more I read about what people have gone through, the more I read, about Quiet Hands, the more I read about people having stims taken away and them ending up self harming, the more I end up hand flapping.

The first time I remember handflapping was after spending time with someone who flapped - it was like I picked it up from her. I started using the stim that she was using. From that, it started generalizing. I started having multiple different types of flaps. I now have an excited one, a hurrying one, a wanting a communicate one, a "this person gets it" one, a "I'm proud to be autistic" one (which comes out after reading well written things by autistic self advocates).

And while I don't remember flapping as a child, its a stim that feels like I can communicate through. Of all my stims, its the best to communicate through.

It makes so much sense that people hand flap.

I'm doing it more and more. And I'm not ashamed.

Because, really. Communication is communication. Curling up in a ball because you can't speak, is communication. Typing, and making your phone speak is communication. Hand flapping excitedly is communication.

Whoever says it all has to be speech is just wrong.

I can flap and people can learn what I'm thinking from that.

Quiet Hands might mean to many that they need to stop.

But to me, it means if they got hurt, then really, there's even more no reason to not be open about who I am as this becomes more and more natural. It makes me want to hand flap. It makes me want to not only show who I am, but use my hands to do so.

Flap away.

The cost of logic

This was discussed the other day with my counselor, and I realized, its probably something that people don't know as much about.

Sometimes, there are specific triggers, that hit my mind, and I lose the ability to process. This makes sense. It breaks my ability to process, because instead there's this other stuff taking over.

But, in particular, the idea of someone acting in a negative mood and telling me they're not, at the same time, breaks me. It takes all of what's going on in my head and crunches it up and says NO. And then I need to get as far away from people as possible.

Because, you see, what this is doing is saying that every bit of the things I've built up for how to understand people are WRONG. People are not trustworthy, and not only that, my brain's understanding of them isn't trustworthy. I can't trust my own sense of what's going on. Everything is wrong, and I can't understand it. I can't be near it until I have managed to sort it out, figure out what's true, and what's false, and piece it back together. Until people are people, and truth is truth, and lies are lies, and my sense of what's going on is trust worthy.

When I'm interacting with people, I'm not doing so intuitively. I'm analyzing it. I'm analyzing it all. So, when my analyzation has been broken, been told its wrong, I don't have intuition to fall back on. And that's what happens. The analyzing requires the ability to trust the analyzing. And when the analyzing has been told its its innately wrong, then how can I trust it? I need to reset it. To tell it, that no. It's correct.

And until that point, people are absolutely terrifying, because I have no sense of what they are doing, or why. Without my analyzing, I don't know what's going on, and without knowing, its scary. So I want to be as far away from people as I can. So I run, and I hide. Because they scare me because I don't know if they'll hurt me. I have no way to get reassurance they won't. Someone who is coming to hurt me, and someone who's coming to reassure me, and someone who's just being neutral are the same at that point. They're all to be avoided, to make sure to avoid the person who'd hurt me, whether they'd hurt me purposefully or by mistake.

And then, I rebuild, and I wait, until something else is too much. And it'll happen, because I can't just take everything. But when I break, its not just being frustrated, its more than that.

Noise

Reading, wanting to communicate, struggling to get ideas out. Okay, I'll sit down and write. I can do this now. It's a way to get ideas out. I can explain how I feel and how I live.

Right, I have stuff to do on this topic. That's a specific thing to do. Explaining about how life is harsh, and you can't just always focus on how you cope, because if you do that then you deny what people deal with.

Writing. Starting to get in the right mode. I can do this. It's starting to work. I've been stuck not managing to do this for months, but its starting to work now.

Type type. type type. type type.

People coming up and trying get me to do other stuff, interrupting all my thoughts. Losing it. Losing it all again. Don't want to lose it.

Please, let me keep the right mindset. Please. Wrapping up. Curling up. Smaller, smaller. Pulling in.

Walking away, realizing they were interrupting me, maybe kept it, back to trying. Writing quick ideas down to remember thoughts.

RING RING

Stupid phone.

SQUAWK

Too much noise.

Talking. So much talking. Squawking. Squawk squawk. Thoughts are running away. They're leaving.

Getting harder to string ideas together. Can communicate well enough to make people think I'm functioning, but mentally I'm lost. Anything I want to do is gone.

All the noises. Too many noises.

Clenching up. Don't want to hear it all.

Feel like I'm going to burst.

Want to just manage to do something effective. Why can't I be effective?

Bark bark bark bark

Even more. Why more?

Holding head. Typing. More headache.

Questions? I'm supposed to answer questions? Right, yes I can do that.

I'm going to just hide now. Maybe the noise will stop eventually.

Rock rock. rock rock

People Not Listening

When communicating is already hard, people not listening rips at it.

When searching for words to say takes a lot, people not believing the words, or trying to put words in your mouth, makes it even more of a struggle to say anything.

When initiating saying anything takes so much, people not taking it into account says its not worth trying.

When its so hard to get people to listen, it rips at emotional scars. It rips at a lifetime of people pushing for normalcy. It rips at people not being accepting. It rips at being hurt over and over again because of being who you are.

It rips at doing everything you can and being the best you can be, and being told that its not good enough.

They just won't listen.

They just won't listen to you saying "let me get help my way, not yours"; "I have my needs, not yours"; "my body is not the same as your"; "This hurts"; "Help, please" or "Leave me alone, please".

They just won't listen.

Because your words aren't what they expect to hear. They're not given in the way they're expected. They're not the words they expect.

And because they're not what they expect, they aren't taken as seriously. Because expectations matter.

So, sometimes, people who have communication impairments end up being better communicators, because they actually listen. Because they realize that not everyone communicates the same way. Because they have to know that. Because they've lived it too.

They've lived the downsides.

They know that people don't always listen.

But why does it have to hurt so much?

Neurodiversity [and disability]

There was a post on wrongplanet asking about neurodiversity and disability. Are they mutually exclusive? How do they relate?

And really, looking at how people talk about it, it doesn't seem like people understand disability as part of neurodiversity.

So I responded. I responded the following:

Neurodiversity is about saying that disability doesn't mean lesser.

I am disabled. I am not a lesser person because of my disability. I cannot do everything that others can. I will never be able to. I will always have needs that others will not. I will always be disabled and not just different.

But that doesn't mean that I'm not good enough. It doesn't mean that I'm not human. It doesn't mean I'm less than someone who's not disabled. It doesn't mean that I need to be cured.

It means that I'm a disabled person.

And neurodiversity means embracing those differences. All of them. Disabled or not. It means saying that someone who needs to read to learn and someone who need to listen to learn both matter. It means someone who can't see a florescent light without getting a migraine matters. It means that someone who needs to use tools to remember what they're doing day to day matters. It means someone who doesn't know how to interact socially matters. It means that we're all people.

It means that disability isn't being broken. It means that disability isn't being wrong.

But its a concept larger than disability.

It means that being different isn't being wrong. Disabled or not.

That's what it means to me.

I'm disabled. I'm not less than someone who's not. I'm just me.

And people agreed. And people disagreed. People either said that high functioning autistic people weren't disabled, or they liked what I said.

But disability is what it comes down to. And its a scary word. And it doesn't have to be a scary word. An neurodiversity is saying its not a scary word.

I am not capable of the same things others are. I just cannot do things others can. This is not a question. This is just a statement. There are things I cannot do. There are major things I cannot do. The fact that its not a big deal doesn't matter. The fact that there's a lot I can do doesn't matter. The fact that I work around it doesn't matter. There are things I can't do.

That's what disability means - that there are things you are limited in doing or can't do. Not that you can't do anything. Not that you aren't good enough. None of that. I am disabled. I am disabled by the same stuff that calls me autistic. By the stuff that makes me deal with a sensory system most people can't imagine, and by the stuff that makes my nonverbal communication a mess.

But neurodiversity says I'm good despite that. Neurodiversity says I'm not wrong. Neurodiversity says embrace those differences because differences are good, even if it means I'm disabled. Disability isn't wrong . I might not be capable of everything. But I'm capable of enough.

I'm capable of being happy. I'm capable of enjoying life. I'm capable of making a difference. Sure, I need help. Sure I'm not capable of everything that's normal. That doesn't matter. I'm not a lesser human despite that. I don't need "fixed". I don't need pitied.

I need helped. I need accepted. I need treated like another person, and a person who's needs aren't the same as everyone else's. I need acknowledged. I need to be me not someone else.

So yes, I'm disabled. But accept me anyways. I'm not broken. I'm just disabled. And disability doesn't have to be scary.

Tinted Lenses and Irlen Syndrome

I've had so many posts I've been wanting to make and have been not managing to get the words down. However, this post is a straightforward one.

At some point last year through some of the Sensory Processing Disorder people I heard of people using tinted lenses. Some of them also mentioned Irlen Syndrome, and we were going through the self-tests and commenting about how many of the criteria on the self-tests we meet. I meet almost all of them for headaches or light sensitivity, and in the long form, more than 3 in some of the other sections as well.

There is an Irlen center somewhat local to me, and I contacted them asking costs for everything over the summer. They gave me costs (which I don't remember the numbers of), and mentioned that November 1st they were going to be training people as Irlen screeners, and that if I wanted to be a person used as an example for them to learn on, then I could be screened for free.

So, November 1st I was screened for Irlen Syndrome. The screening process was quite interesting. I ended up in major overload and not being able to function for multiple days after it because of how much sensory overload I was in because of it though. They were nice and skipped over some sections when they wouldn't give them any information (i.e. We know she reacts poorly to florescent lights if she has such strong self reports and reports that from her occupational therapist so strongly, lets not test it here in order to try to not put her in overload as long as possible). Lots of what they did was purposefully putting visually difficult patterns and having me look at them and trying to cause visual distortions to come up - such as a penguin made up of Xs, or a drawing of a cube split unevenly.

My screening came back as expected saying that yes I did have Irlen Syndrome, so they then went and figured out what overlay color would help me. We went through different overlays and combinations of overlays until we figured out that aqua + aqua + grey was what would help me the most so they sent me home with that combination.

They agreed that tinted lenses would be really helpful to me - that they'd do far more for me than overlay would, so it was then a question of getting to tinted lenses. Going through the Irlen Center would cost money, we could do it cheaper than that...

You can dye polycarbonate (and other plastics) with synthetic fabric dyes. So we bought Blue and black dyes) and set out trying to get frames. Ended up trying to get rimless frames because we could try to do more ourselves with rimless frames, but we kept messing up trying to make lenses.

Last Tuesday we managed to dye a piece of plastic to the color of blue that I wanted my lenses to be dyed to. Later in the week we went to the optometrist, got other frames (thus if you try this route, don't go rimless they can't use rimless with tinted matching always), gave them the match, and told me I'd get my lenses Monday or Tuesday.

Yesterday at 2 pm (after I wrote most of this up actually) I picked them up! They still need adjusted for fit a bit, because I want them to be crooked in a particular manner to make them crooked with my face. It shouldn't be a hard adjustment now that I figured out what I want (I wasn't managing to explain there what I was wanting so we got them to comfortable and visibly level, and considered that good, now I've figured out what I was wanting).

Jonored is looking at possibly making blinders for the side if I have issues with peripheral vision and them, a few different possible materials have been looked at. I really like the idea of removable blinders, but I don't want to add on to his projects if he doesn't have time, so its currently an "if it becomes necessary, and let him think about how he wants to do it" thing. It'll probably happen though.

Anyways, I've definitely noticed they've helped. I'm going to after a while of wearing them go through and figure out in what areas are they helping. So far I know they're helping with florescent lights at least to some degree in particular and overall helping.

Communication difficulties

It's getting harder to communicate. I don't know how much is my meds, how much is stress, but its getting harder to communicate.

It's harder to find words that I'm looking for. I end up rambling trying to find what I'm trying to say. My sentences are ending up long winded and harder to follow.

Jonored is finding it hard to understand my speech patterns now, because of the stop and go patterns, combined with the sentences getting longer. Sometimes they get too long to keep a single sentence in his head at once, unless I stop and plan the entire thing out before I start speaking.

At the same time as this, a lot more frequently, its just feeling not quite natural to speak, and at times to communicate by words at all. If I actually think about it in these states its not even hard, it just, doesn't feel right.

The part that's actually getting to me, is the fact that its getting harder to write too. I will go and have ideas and I'll want to put them down, and I can't get them out of my head. They feel trapped, making me feel trapped.

I think its a combination of both. I'm trying to figure out ways to compensate. The topamax is helping with my headaches, but when we went from 100 mg to 150 mg a day the side effects jumped drastically. At the same time, my stress level, and the amount of stress I'm around is possibly making that worse. I don't know. Jonored and I are talking about me asking about reducing my med dosage back to 100 mg when I see my neurologist again, because this is getting really hard on both of us. Maybe as I'm on this dosage longer it'll get easier? It's been a while though.