The spoon cost of walking

The theme of my thoughts as I try to write up something for rare disease day this year is simply just how many spoons it takes. Just how exhausting it is to have to constantly be walking the line of needing to explain but not wanting to explain. Just how overwhelming it is to navigate medical systems when even doctors don't recognize that what happens to you body can happen. The exhaustion of fighting for accommodations, and the disbelief from people that you cannot possibly need the accommodations you need, and the overall being told over and over and over that you cannot exist.

Really that, in many ways, not existing to people, and that meaning being told things over and over and over that aren't true and can't be true, and being told that your existence isn't valid and can't be real. And just, being tired. Just being out of spoons. Just, everything being so much, because it's so always. Everything is built for abled people. How much fight do you have? Because every last moment of existing while disabled can be a fight. And when your disability is something that people don't believe exists on top of that, it has it's own details of how that happens - not better, not worse, just different, and it's own sort of tired.

So I keep trying to explain, and I keep failing to explain, any of the parts of what it's like that it feels like are overlooked. People seeing some parts and missing others. And I wrote this, and shared this, and it describes some parts of how I interact with my body that I have realized that not everyone does. And at the same time, it describes absolutely nothing. It feels useful to describe, this is how my body works! Think about how much it takes, how much effort it takes, think about the spoon cost if you were to do things this way. And at the same time, it misses everything, because this is such a tiny portion. This is that are background noise to me. This is spoon cost, not things that are anxiety, not things that are daily planning, not things that are choosing what I can do, where I can go, how to do things, not the overwhelming layers upon layers of planning that go into everything. This isn't everything that isn't movement and there are so many other thing. This is such a tiny fraction that it feels like nothing.

And at the same time, it feels like it's so much, yet another place of the overwhelming exhaustion of never having spoons because abled people just take things for granted and like, how do you do that, I don't understand. So, while things are nothing, and so much at the same time, I can try to explain, any parts of what it is like to live with my disabilities. Things people take for granted that I can't. Because, really, I'm just so tired, and I have so many reasons to be tired, and people don't see any of them. So I'll try to explain, anything that is explainable in the words I have right now.

Something I've had trouble explaining to people lately is just how much Effort it takes to have body do things. How much cognitive thinking about and concentration and knowing that if you mess up any one step then it all falls apart, and that's not just your body but your thoughts, because you have to make the decision to do each part of those actions.

Apparently this isn't how people usually walk? Apparently people don't usually walk by actively deciding to pick up foot, move foot forward, remember to balance, remember to keep foot pointed forward, think about keeping ankle oriented correctly, think about how you place foot down, all of the steps of walking, split up, and thought about for each step.

And it spending all the spoons for it to take that much thought. Because you need to keep track of all those things simultaneously. You need to do all those things simultaneously. You need to concentrate, and you need to force your body through not knowing how to do things.

Apparently people don't have this, and this doesn't make sense to me, because this is how using a body works. This is how speech works, from sorting out what to say to forcing words out of mouth. This is how controlling limbs works. This is how trying to keep track of where body parts are, and what they're doing is. This is just, what my body does.

Except, I can't even just say that this is what my body does. Because that is an oversimplification. Because I know it's unusual to have migraines that come with things like sudden weakness. Where on top of this, I'm needing to through force of will manage to Move and Do Things in order to manage to get through basic daily necessities or staying safe. Where I don't know how to keep my body upright because of not having enough strength in my leg, I need to drag it behind me, but trying to force myself to do it anyways, because it's the only way to get away from places that will make the migraines worse and worse, and in doing so, have my body fall through levels of things it can and cannot do in ways that do not make sense even to me. Because people see what I "can" do, what I can push myself through, at least sometimes, when it feels like I have to. And they don't see the cost. They don't see the days after, when my body doesn't respond, no matter how much I tell it to, because it is it safe enough without. They don't see the physical pain that has been caused. They don't see how exhausted, overwhelming exhausted, everything makes me.

And what isn't seen is the failures. The times when my body says, what, you want to climb a stair, I don't understand how you lift a foot, and put it on a stair above, that concept makes no sense to me. The times where I go to put a foot down in front of me and I just put it down with my ankle sideways. The times where I try to step without lifting my foot. The times where my leg gives out because no matter how hard I try, the strength just isn't there and force of will isn't enough.

Those aren't remembered, by people who don't deal with them regularly, aren't fighting against them always. I'm just "clumsy". Not actively fighting my body to force my body to move. Not feeling like fighting through quicksand would be easier than just trying to get to where I need to be, because every step I feel like I'm going to fall on my face if I don't do it perfectly right.

The failures aren't remembered by people who aren't terrified of them, because of not knowing how bad they are at times. Random falls, because of strength leaving, not being able to control limbs, all control gone, no matter where I am. Terrified this will happen in the road again. Not having ways to prevent it, because that's just how my body works, it takes effort to do things, it can't always do them. I can't predict when it can and can't. Triggers aren't predictable. Triggers are everywhere. Always. Nothing is safe.

What is seen is someone who spins and jumps and uses body in ways to make brain feel better. And what is missed is how much work it is to do.

So I'm told how much I don't need help. How much I can't need help. How much I should be fine.

I don't need a placard. I don't need crutches. I don't need to use straws to drink out of cups that my body can't predict how they move, and in times when my strength and coordination are even more unpredictable than their baseline. I don't need people with me to help me. I don't need things. Because I could usually make due enough to survive, if survival was all that I was trying for. If I was not going to do anything else. If I did not try to do things like leaving my room, that's an option. Not an acceptable option, but an option.

Because trying to do anything, and I just can't keep up with myself. I can pretend hard enough at times, but I just fall further and further behind, burning myself out further and further the more I pretend.

Apparently people don't have to try so hard to do everything. Don't have to think about every word coming out of their mouth, don't have to plan every motion. Don't need to concentrate, focus, force everything to happen.

But this is how I have to do things. This is how I interact with the world.

And it's fine. I am happy this way. But it should be recognized, that this does take spoons, and I simply get tired.

But you wouldn't want to do that with a migraine...

There are some assumptions that are common around me. That are made about me:

1. Migraines are headaches
2. I cannot be as sensitive to things as I am.
3. If others cannot understand what is going on, it is necessarily psychosomatic
4. I would definitely never want to do anything if I have a migraine or might have a migraine.

This is about that last one.

Some people whenever they have a migraine, curl up and hide from the world. That's okay. There's nothing wrong with that response. (And in fact I highly support and suggest it for many migrainers.) I don't. I don't see myself as having that option, because I can count the number of days on one hand where I was free from migraine associated symptoms in the last 5 years.

Still, when I speak to anyone, if they find out that migraines are a part of my life, people still immediately jump to that assumption. Migraines mean hiding. People who should have nothing to say will start lecturing me about how these clearly aren't migraines because I'm not going and hiding myself away. People whose job it is to help me develop skills, do so with the assumption that my migraines will never interfere.

Think about that. I can count the number of days in the last 5 years where once you count prodrome and postdrome I wasn't in a migraine. It is less than 5. And people who are working to help me with my disability are assuming - after I tell them about my migraines - that said migraines will never be relevant.

One of the things I've been doing lately is getting O&M. It took a lot of fiddly in order to get vocational rehab to be able to cover O&M as someone who is not legally blind, but with spending a significant portion of my time with dramatically reduced field of view and blurry vision inside that, it seemed important.

At every level of this process, people have assumed the most I'd do is get to a safe space, not continue to travel without sight. Even though I explicitly spoke about how my migraines affect my vision, and how I don't want to be limited by that. People view this as about only safety, not about me being possibly able to access this I'd like to do. That's the general assumption.

Sometimes people will pay attention to me avoiding triggers, but attempting to exist with a migraine, that's something that seems unspeakable. The label of migraine suggests that the accommodations I need aren't allowed, people don't do these things with migraines.

This assumption traps me. I can't say what is going on without more discussions. If I don't say anything, then people assume I'm not in a migraine. I have the choice of either allowing myself to be in more pain because of people ignoring what matters, or dealing with people requiring information to let me simply continue in my day.

This assumption exhausts me. Because I can't simply be as a migrainer. A chronic migrainer. Someone who knows that they're going to be in migraine. And who lives like that anyways. And who wants to be accommodated like that. And who it's always a fight, because, I don't exist.

This assumption is always there. Other people think they know best.

Migraines aren't pain

Migraines aren't pain. Migraines aren't bad headaches. Migraines aren't "oh, yeah, everyone has headaches" or even "yeah, everyone has migraines sometimes"

Migraines are being trapped.

They're the exhaustion of watching, searching, finding every trigger you have, and knowing no matter how hard you look you'll miss them.
They're the exhaustion of trying, time after time, to find safe activities, but instead finding more places that are neurologically unsafe.
They're the exhaustion of needing to rely on others, because of not being safe to drive and public transit being inaccessible. And cities in general being inaccessible, so not being able to so much as live somewhere with public transit.
They're the exhaustion of trying. And the hopelessness of failing.
They're the trapped of knowing that people say they care and don't.
The trapped of knowing that every mistake you do costs.
The trapped of knowing that every time you go anywhere you are weighing the cost over the otherwise trapped of never leaving.
The trapped of wanting to do things.
The trapped of making things not happen and knowing it is because of you.

Migraines aren't pain. They're the work of trying to manage.

They're the knowing how it doesn't matter how much you do, you'll still end up in migraine anyways.
They're the knowing that if you don't try it'll be so much worse than if you do, so that statement of "it doesn't matter" is wrong.
They're the knowing that more of your energy goes to trying to manage trigger avoidance than actually manage activities you enjoy.
They're the burnout when you've run out of spoons simply by trying to manage, not by trying to do.
And they're the trying and trying and trying and trying and trying too long and too hard to the point you hurt yourself in the process.

Migraines aren't pain. They're fear of unknown.

They're needing to be prepared for every situation.
They're needing to know that migraines might, and will, occur, in the least expected times.
They're needing safety plans.
And plans for simple things. Like what do I do when my brain will not see.
They're needing escape plans.
And to always plan everything to the last detail in order to have a chance they might be safe.
They're needing to carry so much that people watch suspiciously.
They're needing to train yourself to react appropriately to your body's own reactions.
They're needing to know what to do when because the unknown means not prepared.

Migraines aren't pain. They're work. They're exhaustion. They're misunderstandings. They're flailing around trying to catch anything to hold onto in order to get through a situation when you are both cognitively struggling and needing to escape. They're people telling you that everything happening isn't real. They're hearing that you're over-reactive, faking, none of what bothers you really exists.

And they are pain - but the pain they are isn't just physical. It's pain of trying and failing, and just wanting to curl up and cry because how many times can you go out and fight a world to simply exist in it.

Accessible doesn't include me

I don't have a choice of always watching, always being on alert. I don't have the choice of always making myself aware of everything going on around me, no matter how many spoons it is costing.

I don't have a choice, except to be on high alert, or to find one of few close people who will watch out for me, warn me, and take on the burden, exhausting themselves in order to make an experience easier for me. Only in those situations, can I let my guard down, letting myself down to low alert, and even then, I must pay attention always.

I don't have a choice, for things happen fast, and I need to react. If I don't, I am the one paying for what others are doing. I am the one spending days in pain, losing the ability to do things as simple as eat or sleep, see or balance enough to take a step forward. I am the one thrown into pain as my brain breaks into migraine day after day, because of what happens around me. I am the one who has to try to keep myself safe, because I cannot trust that I will be safe in the migraine, cannot trust others will help, and cannot trust that others will do a thing to prevent the migraine from setting in.

It doesn't matter how accessible a place is. Accessibility doesn't mean me. It doesn't mean someone for whom the smell of perfume will near instantly change whether or not they can be in a space. It doesn't mean someone for whom someone sitting next to them after smoking, is a way to question chance only about how bad the migraine gets based on how fast they escape, not even a question of whether it occurs.

It doesn't mean someone for whom the lighting, the sounds, every one of those things, are more ways to chance what is going to happen. More ways that already affect what is going on, how well they can speak, or recognize faces, or navigate space.

Accessibility doesn't mean including someone for whom you need to control the environment. We have to take care of ourselves. We have to watch out and protect ourselves.

I'm lucky this isn't life or death for me. Other people are not, and can literally die because of the accessibility challenges that I see every time I go anywhere. (I'm so glad I don't have seizures.) In either case, accessibility should not be limited to ramps and CART. Accessibility should include me even though it isn't life or death. It should include people for whom it IS life or death for. But in both cases, if the environment matters, it doesn't.

I wish you'd hear me

If I say these words, will you listen.
Or will you hear what you expect.
Will my words get lost in a sea of sound?

Does your selective hearing work among ideas too?
As it does the sounds in the world around us?
Do you get to hear what you choose, blocking the rest out?

I wish I could show you. Maybe then you'd understand
The ticking of the clock
The humming of the fan
They jam me up, they block my thoughts, my decisions, my ideas from traveling
Anywhere at all
While you deaden your senses to the world

I wish you'd see. The closing in. Darkness.
Or the narrowing confusion of not knowing what is around.
Not being able to rely on whether something is truly there or not.
Not knowing how far it is.
Or even knowing that there is so much more vision out there than you currently understand.

I wish you'd believe me. The pain. The blankness. The not knowing who or what you are.
The not knowing what will happen this time. Will I be able to see? Speak? Walk?
Always planning. Always ready.
Never being enough.
The struggle of someone who at any moment might Stop.
Their motor cortex having been taken over by the migraine spreading through.

I wish there was a way that would be enough
But more, I wish you'd believe
And that there might be at least one safe place.

I wish, that maybe my senses were listened to
By someone not me

A migraine

My vision blurs and my head spins
every step becomes a mountain
every minute, who knows?

The noises blur,
louder and louder
coming at me from every which way
indistinguishable,
just a cacophony of pain

My tunnel shrinks
False lights blinking and flying
Blurring, shrinking, growing, moving
all of the information, lost in the shuffle

The ground begins to move
and I flip - upside down
So many lies about how I am moving

Walking? Shuffling? How do I balance?
I don't even know where I am.
My arms, my legs,
what are these things?

You've helped, and I've found them.
I can once more move; am no longer trapped
with the fear,
knowing I'm unable to move.

But still, they won't listen.
My fingers won't hold things
the doors, won't open when I push.
The movements hold me in their own new way.

Spinning, blurring, unable to speak
Unable to remember words
Unable to hold onto ideas
Unable to speak those few things I can find

Lost, confused, and trying to find a way
through the maze that keeps building itself.

Every task having more and more steps added,
and the steps in the middle stolen.
Every path having more and more obstacles being put in my way

As the pain, increases.
And the rest does as well.

Until eventually I find that way through, in its own weird way.
Or I don't.

Because what I do
or don't do
is dependent on how my brain works today

Not on your expectations.

Choosing pain

Have people ever felt pain? Have they ever felt limited? Have people ever felt a struggle, like they want to do something, and they can't manage to, no matter how hard they try?

I can't understand. Everything I know suggests that everyone feels pain, that everyone struggles.

So why would I be told "You're only disabled because you want to be"?

Why would I be told, that I choose to have migraines? Because I have been told that. I've been told that if I just wanted to not have migraines, then I wouldn't, and that the only reason I have them is that I want to be disabled.

Why would the implications be "you want to have migraines"? As if the "services" for those of us who are disabled are worth spending so much of my time in pain. Spending nights unable to sleep with my head being split open, and my brain being compressed by a skull crushing in on itself. Spending days with my head spinning, unable to identify where I am, where my limbs are, how to move them enough to do tasks like pick up things, or open doors. Spending days unable to speak, my vision blurring, sound coming from all directions...

Why would someone suggest that it'd be my choice, to struggle to find ways to do what I can, because I can't find a place that I can be without my brain saying my body won't work. That my senses lie even more than they normally do, that my body won't listen, that everything, and nothing is too much, and that the confusion of existence is beyond my comprehension.

Have they had pain? Would they choose it? Would they choose a struggle? Would they choose to fight against feeling like they can't do anything?

Because that's what I do. And it's not because I choose to have migraines. It's because I choose to limit how much they limit me. I choose to say, I know I'm disabled, and I'm going to go out there, and do everything I can, even when that's fighting against my body. Even when that's struggling to find ways to exist.

Every day I go in public, I do it knowing I'm probably going to get a migraine. And yet, I can't stay hidden in my room. (and truthfully, even here hidden in my room there's a high chance of migraining too).

I build up skills, tools, adaptations. I take meds, carry more. I carry too many tools, and train my brain. But I choose what is right for me.

AND IT IS NOT CHOOSING TO BE DISABLED

It's me choosing, that sometimes, its worth going through everything that a migraine entails, to go and spend time with friends. Sometimes, its worth the pain and suffering, the confusion, and all the aura entails, in order to have a chance to make a difference to others. Sometimes, its worth the migraine, to get out of a single small room, and face the world, getting to choose what I'm doing, how I'm doing it, until the fog rolls in, and my neurology overtakes my ability to choose what I want to do for something other than keeping myself out of situation of everything being too much.

Would they choose pain?

Because I'm the one who has that choice. And its not nearly what they think it is.

My voice not responding

I'm afraid
I sit here, my voice not responding, knowing I'm at work
Knowing that I have the choice
Attempt to continue
Or take care of myself

Yet taking care of myself won't make a difference
I'll still be in pain
There's not even a way to sleep
I have to push on either way

So why not, step up
Pick up a my cane
Push up, hold myself up, wobbling
But stepping
One step
Two step
Step by step, until I make it down the hall

Why not go on to the next class, no matter my pain?
No matter my balance issues
My senses throwing abnormal information
My nausea
And fighting to stay awake
No matter what ever is happening today
Why not?

I'm afraid
As I sit here, my voice not responding
People walking in, trying to speak to me, and me not being able to reply

Staring down at my phone, looking at my app, knowing its usefulness
And knowing here, I'm already disbelieved, looked down on, and supposed to be a "professional adult"

I have my solution
I can go, I can type, I like my app
But, will they respect me if I do?

Will I be treated as a person?
Will my knowledge be ignored?
Will what I've accomplished already be discarded because of my disability?

Is acknowledging who I am
Allowing myself to show
And allowing myself to take care of myself
Professionally safe?

I don't know.

I sit, not replying
Not knowing whether or not to click the saved phrase
Saying to those speaking to me "I have a migraine"

Until eventually I decide to go to class
And there, sit, not speaking
And not saying anything with my phone.

I feel like I did something wrong.

My survival kit

People have wondered, what are your tools for getting through the day? I carry things with me always, with more at home, so that I can cope. What I use varies on my situation, what I need varies on my situation, but I always make sure to have things available, because need frequently occurs.

I carry my backpack with me almost always. This is because its filled with tools that I need to assume I'll need except in unusual situations, and can be really awkward to swap stuff around for carrying things in alternate ways. When I need to assume I need everything, carrying a backpack is basically a necessity. When I'm not carrying my backpack its because I've pulled some of these things out, and also have a human there to assist me who knows how to if it is necessary to. I don't want to rely on my boyfriend if it is not necessary to though, so unless it is a minimal risk situation and he is there, I'm bringing my backpack.

Backpack's default set of items:

• Medication: prescription meds and supplements organized in a 4x a day weekly pill box, OTC things in my keychain, migraine abortatives, medication is necessary to always have available with me, and organized where it is needed rather than just thrown into my backpack and expected for me to figure it out when its necessary

• Earplugs: Noises are too loud and overwhelming. Earplugs are itchy and problematic, but laying hearing protection is sometimes necessary to survive without feeling like I'll explode. Also, I carry them on my keychain, so if I need to just pull my keys and wallet, I'll still have something to help reduce sensory input.
• Earmuffs/Ear defenders/whatever you want to call them: Primary hearing protection, I use earmuffs despite them being more visible, because they don't itch inside my ears. Sounds are too loud, too painful, mess with my balance...No matter how much hearing protection I use they're still easily understandable, but sometimes its no so overwhelming when I'm using it, and worth the discomfort of wearing things that do something like squeeze my head.
• (Folding) Long cane (also referred to as a white cane, though mine isn't white): Being able to always process vision isn't something I can do. How well I can understand what I see varies drastically, and how much it costs to go through that process of decoding what it means varies drastically. When it is more costly, or when no matter what I do I either am running on a few seconds delay for vision, extreme tunnel vision, or simply seeing but not understanding, I implement (more) strategies used by blind people. It allows me to use my mental power for things other than attempting to navigate the world by sight when sight isn't working with me.
• Folding balance cane: My migraines come with bad vertigo at times. I vary from being able not being able to walk with my cane, to running up mountains which require awkward navigation. I plan for both. Sensory overload, migraines, vertigo setting in, my body might feel itself or the world moving, my leg might spasm and tense up, not wanting to work without being in pain. Whatever it is, I'll not be limited, so I'll move with things that I carry instead.

• Tangle Jr: Such a useful stim toy! I carry the one which is covered by a squishy rubbery material, I don't remember what its called. So many reasons to want to pull out a toy and such a useful one to have
• Rite in the Rain notebooks: Because my hands hurt when touching normal paper. They feel like the sound of nails on a chalkboard. I can't handle it, and it makes me want to bite myself, though I rarely follow through with the urge. Having paper that is coated for waterproofing changes the texture enough that it doesn't hurt anymore! And they're waterproof paper too which is awesome.
• Compression gloves: My hands are the most reactive to everything texture, and frequently hurt. Showers hurt them badly. Sometimes simply the air hurts them. Compression gloves help, though don't get rid of it completely, so I wear them when it gets bad. They make it harder to do things, and make me prone to losing my medical alert bracelet, so I try to limit it to necessity, but when necessary, its the difference between being able to concentrate at all, and all my focus being on "my hands hurt".
• Altoids: PEPPERMINT
• the heaviest drafting pencil the stationary store had: Heavier pencil makes my handwriting so much neater, and makes it so much more comfortable to write.
• Kindle: Always have something to turn to! I always can go to any of my books. I don't need to read paper books. I can always turn to my books no matter where I am or what I'm doing!

Other tools:

• Smartphone/tablet (7"): I use both my phone and tablet (both android) heavily. I have communication apps, stimming apps, executive functioning apps. I use alarms to help me organize my day, complete with different sounds for different things. Having a computer on me always has been a thing I've relied on, but with smartphones I've been capable of swapping to just having my phone, though my laptop is very important to me.
• Tinted lenses: I wear greyish blue tinted lenses in order to help with visual processing. They help with having fewer visual distortions, fewer headaches, better depth perception, and generally, better visual processing.
• Medical alert bracelet: I'm always wearing a medical alert bracelet that tells people about my migraines, autism, and medication allergies. I've needed to use it before to communicate to people on my behalf.
• Compression shirts: Compression shirts are very useful for deep pressure that you wear on your body and carry with you always. Wearing them under whatever you'd wear that day for clothing, just works well. For extra compression, breast binders work well but some people would prefer not to use such a thing.
• Weighted blanket: I spend most my time at home under my weighted blanket, despite some people saying this is a bad idea. Without my weighted blanket I struggle with understanding where I am in space. With it, I can think clearer, and am more aware of how things are supposed to be, rather than the weird feelings of wrongness that exist in my limbs.
• Weighted vest: While the weighted vest doesn't work as well as the weighted blanket, it is a useful tool to add when going in public along with the compression shirts.
• Vibram Five Fingers: We have a theme here on the propioception impairments...Using minimalist shoes means that despite propioception impairments, I don't have issues with things like constantly spraining my ankle anymore! I'm able to use touch - feeling the ground beneath my feet - in order to adapt for the fact that my propioception is impaired.
• Peppermint oil mixture: I carry this in my backpack if I have a choice, but at the moment its in a bottle where the lid might get broken :(. A mixture of 50% peppermint oil/50% everclear, its useful for so many things! Topically its a good muscle relaxant. It's a strong peppermint oil, so it can be added to drinks, for peppermint flavoring, dealing with the fact that I can't drink water straight. The fact that I seek peppermint also has great benefits with such a mixture...
• My swing: I have a swing in my bedroom! It's awesome. It's an egg-swing I describe it as. Whether I'm actively swinging, just sitting in it hanging from it rather than sitting on something stationary, it is calming, and gives me a different sort of sensory input than not being in my swing does.
• My cat: She does so much for me. She's my ESA, my migraine alert cat, just my cat. She could easily be a service cat if I lived somewhere where I could have a public access service cat. I can't read my own emotions, but she can, and I can read hers, reading them off of her. She leads me away from situations when I'm getting overwhelmed. She helps with meltdowns. She alerts to migraines. She is too smart of a cat, and the perfect cat for me, doing so much for me.
• My cloak: In the winter, or fall or spring really, I wear a cloak for a coat. It's like a portable blanket! As well as all the other benefits of wearing a cloak (really, they're just better in so many ways), I get the feeling of wrapped up like I do in a blanket, and can use it like a blanket in public. When I prefer to wrap up in a blanket so strongly, this is so useful.
• Cefaly: This is an incredibly useful and incredibly interesting device. It's frequently referred to on the internet as a space crown or a space tiara. It's a device you wear on your forehead, have do electrotherapy for 20 minutes a day, and it reduces the number of migraines you have. Also, if you wear it during a migraine it can reduce the severity or even get rid of the migraine! It's really awesome, and my favorite part of my migraine treatment.

Other sensory things that I'm not currently using as much

• Brush for Wilbarger's brushing protocol: This protocol has been very useful! I still have brushes for "tune ups", though I don't do so frequently, just because of being out of habit. It's useful to have for when I need and remember, even if being out of habit makes it hard to use every time I'd prefer to. And the protocol was drastically useful when I went through the protocol.
• CDs and Headphones for Therapeutic Listening: Similar to Wilbarger's Brushing Protocol, I went through this program, and use these for tune ups now when I'm most sensorily in need. In these one's case it has more to do with when I have the time to be spending 20 minutes no doing anything mentally stimulating, and not moving (because while you're allowed to move around during the program, my body cannot handle moving at all).
• Theraputty: Great stim toy, even better for strengthening wrists when you've injured yourself stimming. I have the set of 6 different colors and will work my way up to the second to strongest from usually the second to weakest if I've done something like bothered my wrist. Otherwise, I like the second or third to strongest to play with.
• More stim toys: Description unnecessary in my opinion.
• Noise cancelling headphones: Really useful to have some proper noise cancelling headphones, but it requires having good noise to play with them. Wrong noises and I can't focus on what I want to focus on.
• Respro Mask: I have an activated charcoal/HEPA combo filter mask, for dealing with smells, how toxic the air is, etc. It used to be one of my commonly used items and always in my backpack. The issue is that my face is too small for it now :( and in order to get a smaller one I need to buy both a more expensive mask and a filter that isn't the filter it originally comes with so I keep forgetting to order it.

Plus, on top of my tools, I have many coping strategies that are internal. I have taught myself how to use sensory information that isn't the "expected" one for a situation. I will visibly stim. I will use things like walking following lines, with my hand on the wall, or feeling where the grass is and where the sidewalk is. I've taught myself how to turn off processing for senses at will, allowing me to not be overloaded by them, or to be more easily able to process other senses, or other ability (such as speech). I've taught myself how to alternate necessary skills, in order to get through a situation, when I should need all of them, but can't do all of them simultaneously, by turning off everything that isn't completely necessary; keeping myself balancing, walking, seeing, speaking, in turn.

I have lots of skills, lots of tools, and use them. Because I know I am impaired, but I want to do things anyways. If that means doing them in odd ways, where I end up exhausted, dependent, and in pain, I'll do them anyways, because I'm going to choose at times its worth it and know how to do it when it is worth it.

Questions

No matter how many questions are answered, there are more waiting, questioning. No matter how many questions are asked, there are more out there to be found.

No matter how far you search, reaching farther, journeying longer, is always a possibility.

And that is the journey of our lives.

Our lives of questions, answers, solutions, and challenges; ways to cope, and never being enough, but always questing for further solutions, further answers, further skills to aide. Our lives of asking ourselves what we are doing, and how we are doing it, finding new ways, and doing it.

My life is a life of questions. Everyone's is, but mine I see a list of questions with every action I take. How far can I push myself? What are the things I need with me now to protect myself from my neurology? Simply, what do I do?

My life is a life of answers. We all answer questions. We all quest and grow. We all challenge ourselves and come out ahead of where we were.

So my days, I have questions. They are the questions of my days, of what do I do, and how do I do them. They're the questions making me choose how I act. How do I get through a school when I don't know where I am? How do I teach when I can't see more than a square foot at a time? How do I walk when I don't know how to balance? How do I prepare when I don't know what symptoms will hit? How do I navigate when my body tells me I have choices like being able to step forward or having any sight, but not do both simultaneously? How do I keep hydrated when I end up so heavy that I don't remember how to stand? How do I keep safe, when my motor cortex might stop working?

And then. Then, I answer these questions. I find answers, I don't say I can't. I find ways to navigate a school on memory and touch. I plan what to carry, and organize it carefully. I teach my brain how to stop using vision, so I can use other senses more efficiently, and process with other senses when I need to, giving myself enough tactile input that I know where I am. I teach myself how to use sounds. I practice using other sorts of motion, other parts of the brain, for when I need it, so I'm not trapped in place.

I find answers. I find ways. Because I'm not going to be trapped. I'm going to adapt, I'm going to find a way to succeed. My body might not respond like yours does, but I can answer how I can can do it. They are my questions.

I challenge myself, and constantly, I'm asking more questions, and finding more answers. I'm finding more ways to cope, more ways to adapt, more ways to make myself work better in a world so toxic. And answers lead to more questions, more ways to seek out ways that I might adapt how I interact.

I question. I answer. I seek. I find. I learn. I grow. And more questions come.

Taking caring of me my own way

I cannot make the decisions you make. I'm glad you take care of yourself. I'm glad you stop and say that you need to. I need to take care of myself too.

I need to take care of myself my way. I need to take care of myself as the person who if I stopped when you did, I'd not do anything, and that wouldn't be something I could manage either. I need to take care of myself as someone who needs to stop for things you cannot imagine. I need to take care of myself as the person who needs to push myself to the limit every day, both because I need to for my own sake and because my body doesn't give me a choice.

I cannot do things the way you can. I cannot leave everything when I get a migraine. I am glad you do. I will recommend to everyone to do it that way. Do not look down on me for doing differently. Do not tell me that my stuff is less severe. Do not tell me that what I'm dealing with isn't really a migraine, or isn't really a challenge, or isn't really "bad". I need to do it this way. This is my way.

I am glad you have the choice of doing something different. I am glad you can leave when every migraine hits. I am glad you can take care of yourself and protect yourself. I do not have the luxury of both leaving and facing the world. I would rather face the world. I would rather push myself to my limit. I would rather roll around a building in a rolly chair unable to stand; I would rather type in an AAC app on my phone; I would rather use a long cane; I'd rather find weird ways of doing something that people don't think of than leave and not let myself manage what I am capable of. That is my way of dealing. It is my appropriate way.

I cannot do everything your way. I cannot take days off work every time I deal with the pain of a pinched nerve. I cannot use ibuprofen to deal. I apply peppermint and cope. It doesn't mean I'm not in pain because I am managing. It is my way. I am glad you choose your way. Your way is better for you. Because I can manage, does not mean you can or should. You should do what is appropriate for you. You also should not minimize what I deal with.

I cannot do things your way. I cannot buy a car and drive myself home from work no matter how many times I'm told I should. It would not be safe. I cannot simply organize all the things to get myself a meal amidst all the noises of a home. I need to take care of myself in my own ways, in all of what that means.

My communication is different; my sensing is different; my pain is different. My need to push through is different. My need to find alternative ways to find a way in a world. So I do it. This doesn't mean I think you need to. It doesn't mean I'm dealing with nothing either.

I'm glad you can step away when its too much. My "too much" has to be different, though. I need to find ways. I need to do things oddly, and I need to say, what's good for you isn't good for me, and what's good for me isn't good for you.

I need to take care of myself, and do things my way, whatever that might entail.