brightlotusmoon  asked:

I know I've talked with J personally about this, but I really do wonder how many other ADHDers here self-medicate with caffeine and/or vitamins or other supplements (ie, Vinpocetine, Bacopa.) I'm epileptic and having a hell of a time since my doctors refuse to let me on the drugs I actually need. They're that worried about seizures. Last time I was on a stimulant I had fewer seizures, not more. I suppose I need some validation or encouragement or hugs.

Hey, followers, can you help out @brightlotusmoon here? If you don’t take medication, what do you do to manage your symptoms? Do you have epilepsy? What do you do? Have you got any encouraging words?

-J

what you need to do if i have a convulsive seizure

I was just complaining to my friend that my oldest sister didn’t know what to do the last time I had a convulsive seizure, and I ended up injured because of it. And my friend said that actually, they don’t know what to do when they see someone have a convulsive seizure, either.

So I thought I’d explain it to you.  I’m not a doctor, and I have no medical training and not everything here will apply to everyone who has convulsive seizures, these are just the things that apply to me, and when in doubt, call an ambulance. 

Here’s what you do:

Look around. Am I lying in the middle of a busy street or on the railroad tracks, or somewhere else dangerous, like in the bathtub? If yes, drag me to somewhere where I am not in imminent danger of being hit by a truck or drowning. 

Am I somewhere safe, but lying near dangerous things like fire or knives or broken glass or pans of boiling water or anything that can hurt me? Move the dangerous things away from me.

My body will be convulsing. That means my head and my arms and my legs are rapidly hitting the ground. Put something soft underneath my head. If there’s a cushion right there, perfect. If not, wad up your coat or shove your shopping bag under my head. If there’s nothing immediately to hand that would take you more than a few seconds to grab, stick your feet underneath my head, it’ll work.

Am I wearing anything around my neck, like a tight collar, or a necktie, or a choker? Loosen it, so my airway is clear.

Don’t restrict my movements - don’t try to hold my arms and legs down. You’ve already moved all the dangerous things away from me, and cushioned my head, so don’t hold me down, unless it is necessary to keep me from doing serious harm.

Don’t put anything in my mouth. A lot of people think you need to stick your fingers or a spoon or something into the person’s mouth to prevent them choking on their tongue.  Don’t do this. 

Try to make a note of the time the seizure first started. If the seizure lasts for longer than five minutes, call an ambulance.

When the convulsing/jerking has stopped, roll me onto my side. If you know what the recovery position is, put me in the recovery position, if you don’t, just roll me onto my side, and check my airway. If I’m not breathing, or I’m having trouble breathing, call an ambulance.

It seems to be instinctive to help someone get back to their feet as soon as the seizure is over. Don’t do this with me. After a seizure, I’m in something called a post-ictal state. It makes me very, very confused, and lying on the ground or sitting somewhere soft is the safest place for me. If you pull me to my feet while I’m still this confused, I will walk directly into traffic or put my hand on a hot stove because I won’t know where I am, or what’s happening, and often I won’t be able to see at all for a few minutes. Keep me somewhere safe until I’ve fully recovered.

If I have another seizure before I’ve fully recovered from the earlier one, call an ambulance.

If you think I might be hurt, or you’re confused or not sure about what to do, call an ambulance.

That’s all there is to it. Make sure I’m not in immediate physical danger; cushion my head (but don’t restrain it); when the jerking stops, roll me onto my side and check my airway; keep me somewhere safe until I’m fully recovered, and if the seizure lasts a long time, or I have a second one, or you aren’t sure what to do or you think I might be hurt, call an ambulance. That’s it. It’s not hard, and I promise you can do this.

The lack of diversity no one talks about:

Characters with:

- Epilepsy

- Diabetes 

- Psoriasis

- Rheumatoid Arthritis

- Inflammatory bowel disease (crohn’s disease or ulcerative colitis)

- Cystic Fibrosis

- Celiac Disease

- Hypothyroidism/Goiter

- Hyperthyroidism 

- Asthma 

- Paramyloidosis

- Sarcoidosis

- Multiple Sclerosis

- Amyotrophic lateral sclerosis

- Spina bifida

- Lupus 

And many more.

i have epilepsy and one of the biggest things that upset me as a kid is not being able to go to a certain place because “oh that place has lights that they specifically said were epileptic”

it confused me to no end, if they knew it was an injuring, and in some cases, a deadly thing, why use them? why not just use normal lights?

the excuse i always got were “well the other kids love them so…” or “its okay, its not a big deal” why? why isnt it a big deal that a place is openly choosing the entertainment of these kids over my safety and my life?

but the biggest thing that fucked w me as a child is sitting there and remembering that if the lights werent there, i wouldve been completely fine, happy, not limited. that the lights didnt HAVE to be there, but people without epilepsy put them there because it didnt affect them.

that my epilepsy wasnt the thing holding me back in that moment, it was the healthy people who never thought- or in this case thought and didnt care- about the disabled children who wouldnt be okay with those lights. I didnt matter because i wasnt healthy.

and even today, when i think about things like that it fucks w me, because I see it all the time and its a constant reminder that some cute, short-lived entertainment made for abled people is, has been, and will always be far more important than the safety and life of a disabled person.

  • person with epilepsy: i'm going to use a wheelchair today so i can shop without worrying about hurting myself too much in case I have a seizure
  • person with epilepsy at the grocery store: *briefly stands up to reach something on a tall shelf to add to their cart*
  • them: OH I SEE ANOTHER LAZY FAKE DISABLED LIAR FOR ATTENTION STEALING FROM THE REAL DISABLED WHO I ALSO DON'T CARE ABOUT.
  • person with epilepsy: you know... there are other reasons people use wheelchairs for besides completely not being able to walk?
  • person with epilepsy: are you actually saying I should chance having a seizure in here and hit my head on the hard ass ground and possibly concuss myself at a much higher risk than if I am able to use this wheelchair.
  • them: well i didn't think of that because I'm an ableist fuck. (:
My Traumatic Hospital Experience

It’s taken me a while to write about this. 

However, I feel it’s necessary as a person with a disability to share this story in hopes of spreading awareness about the challenges anybody can face when headed to the emergency room.

I suffer from seizures. These started as absence seizures, but over time I began to have convulsive seizures that occurred while I was conscious. The problem here is that doctors expect to see a “certain kind” of seizure, and when your seizures don’t meet these expectations…

Well. They don’t necessarily believe you when you tell them you’re having seizures. So they look to other explanations first.

They tell you you’re having anxiety if your hands are shaking and convulsing. Even if you tell them you’re not anxious at all.

They run drug tests on you without your consent, or without telling you that they’re running drug tests. 

They jump to every possible conclusion OTHER than “this may be a seizure” - even if I have a strong, verifiable history of seizures which I have told them about and which has been confirmed via EEG.

Here’s the thing. There are many, many types of seizures other than the typical “grand mal’ seizure that most people think about. Sometimes you fall down. Sometimes you’re conscious. Sometimes you’re not. Sometimes you do strange things. Sometimes you’re very confused. Sometimes you lose time. Sometimes you experience strange smells.

In MY case, I was having a series of episodes that began with convulsions while I was conscious, and that over time moved to me being frozen in place, also while conscious. 

While “frozen in place” I couldn’t move. I couldn’t speak. I couldn’t do anything.

When the paramedics found me after I called because I knew an episode was coming on, I had fallen to the ground in front of my house because I couldn’t stand any longer. I remember listening to the 911 operator calling for me and me being unable to respond. I remember waiting, and waiting, until I finally heard the ambulance coming for me.

I came out of the episode long enough to tell them I was having seizures. Then I went right back into seizure. 

The paramedics got me onto the stretcher and into the ambulance. Then they began asking me questions. Of course I couldn’t respond. They asked me again and again. I couldn’t respond.

Then the paramedic threatened physical force - pushing on my chest - if I didn’t respond. 

Fortunately I came out of seizure long enough to finally speak back. Then I got to the hospital

Then I got to my room, where I encountered my nurse. Again, my nurse began asking me questions. I began seizing. 

I couldn’t respond.

She questioned me further.

I couldn’t respond. 

“Megan, you have to cooperate,” she told me angrily. 

I couldn’t respond. 

“You have to cooperate!” she told me. This continued as I lay there in my bed, frozen in place, unable to respond, unable to move, unable to do anything as my nurse shouted at me that I needed to cooperate. 

She continued to berate me and tell me to cooperate even after I told her that I was trying - that it was the seizures preventing me from “cooperating.”

Even though I had told the paramedics that I was coming into the hospital for seizures. Even though the nurse should have known that I was coming into the hospital for seizures.

There is an endemic problem in the way that people with invisible disabilities are treated in emergency rooms and doctors offices and in the medical community in general. 

I was traumatized by this experience to the point that I am scared to ever call emergency services or ever go to the hospital for my seizures ever again. I needed to share this to let you people know that this is not okay. 

If any of you ever plan to go into nursing, to become doctors, or simply want anything to do with medicine, do not ignore anybody when they communicate with you - when they say what is happening with their bodies. 

(Note: Satire)

Tell everyone with Tourette’s how disruptive their tics are because they’re totally doing it to be annoying and if some people can suppress tics for days then all people with Tourette’s can, amirite?

Deny everyone with ADHD the meds they need because they just need to try harder to sit still and pay attention like everyone else, amirite?

Quiet hands and other forms of stim suppression makes NTAB peoples’ lives so much easier because who cares about the autistic people amirite?

Sending triggering things to people with PTSD is hilarious. You’re so cool to put someone through hours of flashbacks, phantom sensations and anxiety. It’s just a joke to you, amirite?

It’s totally fine to say something and walk off on an AAC user without waiting for them to compose their response because it’s so inconvenient of them to make you wait, amirite?

Send someone with epilepsy flashy gifs. Their seizures aren’t really that serious and it’s totally their fault for looking at the gif and ending up at the ER in status epilepticus amirite?

Stealing someone’s inhaler from their bag and not telling them where you hid it when they’re having an asthma attack is comedy gold. Watching someone panic because they can’t breathe is the best thing ever, amirite?

It’s perfectly fair to treat nonverbal autistic people who need lots of daily help and can’t make their communications understood like babies because they MUST have brains like babies if they can’t express themselves exactly like NTAB people, amirite?

All wheelchair users love people shoving them and their wheelchair out of the way as they walk by. It’s not their personal space, it’s an obstacle amirite?