SJ [SaliWho]
@why-should-i.bsky.social
Anti-fascist = anti-ableist. We protect us. 😷🏴
I’m @SaliWho on Twitter and me on here.
If I follow you on Twitter, please like my pinned post here, for bureaucratic purposes.
🐤 https://x.com/SaliWho
📍UK
🗓️Millennial
⚡️Fairly epileptic
🏳️🌈Bi bi bi (she/they)
I’m @SaliWho on Twitter and me on here.
If I follow you on Twitter, please like my pinned post here, for bureaucratic purposes.
🐤 https://x.com/SaliWho
📍UK
🗓️Millennial
⚡️Fairly epileptic
🏳️🌈Bi bi bi (she/they)
Harriet Tubman believed her seizures came from a higher power. I’m an atheist but I know how a religious person would interpret them like that.
Dostoyevsky had ecstatic seizures. I get them for a tiny fraction of a second. Feels like access to god. Others feel like world-ending evil.
Dostoyevsky had ecstatic seizures. I get them for a tiny fraction of a second. Feels like access to god. Others feel like world-ending evil.
March 9, 2025 at 1:05 AM
Harriet Tubman believed her seizures came from a higher power. I’m an atheist but I know how a religious person would interpret them like that.
Dostoyevsky had ecstatic seizures. I get them for a tiny fraction of a second. Feels like access to god. Others feel like world-ending evil.
Dostoyevsky had ecstatic seizures. I get them for a tiny fraction of a second. Feels like access to god. Others feel like world-ending evil.
Benefit cuts, health care cuts, assisted suicide bills and unmitigated disease-spread are all the same project: eugenics.
Governments are disabling people, creating unsurvivable conditions for disabled people and then eliminating us as fast as possible, the second we can’t do paid work.
Governments are disabling people, creating unsurvivable conditions for disabled people and then eliminating us as fast as possible, the second we can’t do paid work.
March 7, 2025 at 7:23 PM
Benefit cuts, health care cuts, assisted suicide bills and unmitigated disease-spread are all the same project: eugenics.
Governments are disabling people, creating unsurvivable conditions for disabled people and then eliminating us as fast as possible, the second we can’t do paid work.
Governments are disabling people, creating unsurvivable conditions for disabled people and then eliminating us as fast as possible, the second we can’t do paid work.
Disabled people will ‘choose’ assisted suicide if the UK bills pass and when they inevitably expand, because they’re already suicidal.
All it takes is that one nudge from a doctor or carer, or just the constant knowledge it’s available. No more government money ‘wasted’ on keeping them alive.
All it takes is that one nudge from a doctor or carer, or just the constant knowledge it’s available. No more government money ‘wasted’ on keeping them alive.
March 7, 2025 at 3:05 AM
Disabled people will ‘choose’ assisted suicide if the UK bills pass and when they inevitably expand, because they’re already suicidal.
All it takes is that one nudge from a doctor or carer, or just the constant knowledge it’s available. No more government money ‘wasted’ on keeping them alive.
All it takes is that one nudge from a doctor or carer, or just the constant knowledge it’s available. No more government money ‘wasted’ on keeping them alive.
Can’t think straight. If I take the same dose of Keppra now as I did this morning, I think it might actually kill me.
The tiny, remaining self-preservation clarity in me needs to get off Keppra.
Reduce the dose. Attempt to minimise gaslighting by lying about which side-effects I couldn’t tolerate.
The tiny, remaining self-preservation clarity in me needs to get off Keppra.
Reduce the dose. Attempt to minimise gaslighting by lying about which side-effects I couldn’t tolerate.
March 5, 2025 at 6:20 PM
Can’t think straight. If I take the same dose of Keppra now as I did this morning, I think it might actually kill me.
The tiny, remaining self-preservation clarity in me needs to get off Keppra.
Reduce the dose. Attempt to minimise gaslighting by lying about which side-effects I couldn’t tolerate.
The tiny, remaining self-preservation clarity in me needs to get off Keppra.
Reduce the dose. Attempt to minimise gaslighting by lying about which side-effects I couldn’t tolerate.
Dose 2 of an even higher dose of Keppra. Didn’t work last night. I don’t see why it will now.
This is the first article I saw this morning. I had one seizure where I felt my heart stop completely, long enough to carefully put my laptop on the floor and accept that I was going to die. Lost 9 hours.
This is the first article I saw this morning. I had one seizure where I felt my heart stop completely, long enough to carefully put my laptop on the floor and accept that I was going to die. Lost 9 hours.
March 5, 2025 at 7:44 AM
Dose 2 of an even higher dose of Keppra. Didn’t work last night. I don’t see why it will now.
This is the first article I saw this morning. I had one seizure where I felt my heart stop completely, long enough to carefully put my laptop on the floor and accept that I was going to die. Lost 9 hours.
This is the first article I saw this morning. I had one seizure where I felt my heart stop completely, long enough to carefully put my laptop on the floor and accept that I was going to die. Lost 9 hours.
Ultraviolence is one of my favourite songs. Something has to be very wrong for me to listen to it.
It’s about domestic abuse. Internalised misogyny.
Had it on repeat all day for weeks last year. 2 full days so far this wk.
This 6 months of violent medical misogyny broke me, like it was meant to.
It’s about domestic abuse. Internalised misogyny.
Had it on repeat all day for weeks last year. 2 full days so far this wk.
This 6 months of violent medical misogyny broke me, like it was meant to.
March 4, 2025 at 3:52 PM
Ultraviolence is one of my favourite songs. Something has to be very wrong for me to listen to it.
It’s about domestic abuse. Internalised misogyny.
Had it on repeat all day for weeks last year. 2 full days so far this wk.
This 6 months of violent medical misogyny broke me, like it was meant to.
It’s about domestic abuse. Internalised misogyny.
Had it on repeat all day for weeks last year. 2 full days so far this wk.
This 6 months of violent medical misogyny broke me, like it was meant to.
I know most famous men are sex pests but you can add Bryan Johnson to the list. He’s comparing his number of erections to his son’s, for science, obviously.
March 3, 2025 at 9:36 PM
I know most famous men are sex pests but you can add Bryan Johnson to the list. He’s comparing his number of erections to his son’s, for science, obviously.
Masked professionals giving a clear example of how you keep children with cancer alive.
March 2, 2025 at 9:44 AM
Masked professionals giving a clear example of how you keep children with cancer alive.
People in the Western Pacific are advised by The WHO there to wash their hands for two to three times as long as we’re advised to.
The WHO there also gives them consistently, frequently better mask advice.
An actual culture of normalised basic hygiene. Imagine.
The WHO there also gives them consistently, frequently better mask advice.
An actual culture of normalised basic hygiene. Imagine.
March 2, 2025 at 9:35 AM
People in the Western Pacific are advised by The WHO there to wash their hands for two to three times as long as we’re advised to.
The WHO there also gives them consistently, frequently better mask advice.
An actual culture of normalised basic hygiene. Imagine.
The WHO there also gives them consistently, frequently better mask advice.
An actual culture of normalised basic hygiene. Imagine.
Angela Rayner, joking about opening Starmer’s whiskey in his flat without asking.
The action of an obnoxious, rich person in a job with normalised heavy substance use.
Do what you like with your own alcohol or any other drugs but that’s like going through someone’s medicine cabinet. Dysfunctional.
The action of an obnoxious, rich person in a job with normalised heavy substance use.
Do what you like with your own alcohol or any other drugs but that’s like going through someone’s medicine cabinet. Dysfunctional.
March 1, 2025 at 9:03 AM
Angela Rayner, joking about opening Starmer’s whiskey in his flat without asking.
The action of an obnoxious, rich person in a job with normalised heavy substance use.
Do what you like with your own alcohol or any other drugs but that’s like going through someone’s medicine cabinet. Dysfunctional.
The action of an obnoxious, rich person in a job with normalised heavy substance use.
Do what you like with your own alcohol or any other drugs but that’s like going through someone’s medicine cabinet. Dysfunctional.
More than 1 in 10 autistic people have epilepsy. Do you see all those people talking about it on autism social media? No.
You see the whole autistic community swerve epilepsy because there’s generally no solidarity from autistic people without epilepsy. Identical to stigma from nondisabled people.
You see the whole autistic community swerve epilepsy because there’s generally no solidarity from autistic people without epilepsy. Identical to stigma from nondisabled people.
February 28, 2025 at 11:15 AM
More than 1 in 10 autistic people have epilepsy. Do you see all those people talking about it on autism social media? No.
You see the whole autistic community swerve epilepsy because there’s generally no solidarity from autistic people without epilepsy. Identical to stigma from nondisabled people.
You see the whole autistic community swerve epilepsy because there’s generally no solidarity from autistic people without epilepsy. Identical to stigma from nondisabled people.
Now as I have uncontrolled epilepsy, focal seizures every day, I make sure I talk about it more because most people with epilepsy shut up about it more, the less controlled it is.
They justifiably fear psychological, physical and workplace abuse. You can’t make me care about consequences. I refuse.
They justifiably fear psychological, physical and workplace abuse. You can’t make me care about consequences. I refuse.
February 28, 2025 at 10:39 AM
Now as I have uncontrolled epilepsy, focal seizures every day, I make sure I talk about it more because most people with epilepsy shut up about it more, the less controlled it is.
They justifiably fear psychological, physical and workplace abuse. You can’t make me care about consequences. I refuse.
They justifiably fear psychological, physical and workplace abuse. You can’t make me care about consequences. I refuse.
CN: suicide
So many posts about people with long covid killing themselves like this person or ‘choosing’ medically assisted suicide due to medical neglect/negligence.
It’s a common theme for disabled people in general but the number of people with LC means so many losses in such a short time.
So many posts about people with long covid killing themselves like this person or ‘choosing’ medically assisted suicide due to medical neglect/negligence.
It’s a common theme for disabled people in general but the number of people with LC means so many losses in such a short time.
February 27, 2025 at 9:14 PM
CN: suicide
So many posts about people with long covid killing themselves like this person or ‘choosing’ medically assisted suicide due to medical neglect/negligence.
It’s a common theme for disabled people in general but the number of people with LC means so many losses in such a short time.
So many posts about people with long covid killing themselves like this person or ‘choosing’ medically assisted suicide due to medical neglect/negligence.
It’s a common theme for disabled people in general but the number of people with LC means so many losses in such a short time.
When you get diagnosed with focal seizures, you don’t get advice. No advice about how to not die, even if you keep nearly dying.
Would’ve been good, some time in the last 20 years, if a doctor or epilepsy nurse had told me that a note on my phone and table would make me less likely to die.
Would’ve been good, some time in the last 20 years, if a doctor or epilepsy nurse had told me that a note on my phone and table would make me less likely to die.
February 27, 2025 at 8:45 PM
When you get diagnosed with focal seizures, you don’t get advice. No advice about how to not die, even if you keep nearly dying.
Would’ve been good, some time in the last 20 years, if a doctor or epilepsy nurse had told me that a note on my phone and table would make me less likely to die.
Would’ve been good, some time in the last 20 years, if a doctor or epilepsy nurse had told me that a note on my phone and table would make me less likely to die.
No one can tell when I have focal seizures.
- I bite the inside of my lip
- smell/taste hallucinations (so I thought I kept getting covid)
- tinnitus
- déjà vu
- jamais vu
- terror
- suicidal depression (if I can’t get rescue meds)
- transcendental, meditative, high state
@brainablaze.bsky.social
- I bite the inside of my lip
- smell/taste hallucinations (so I thought I kept getting covid)
- tinnitus
- déjà vu
- jamais vu
- terror
- suicidal depression (if I can’t get rescue meds)
- transcendental, meditative, high state
@brainablaze.bsky.social
February 27, 2025 at 7:46 PM
No one can tell when I have focal seizures.
- I bite the inside of my lip
- smell/taste hallucinations (so I thought I kept getting covid)
- tinnitus
- déjà vu
- jamais vu
- terror
- suicidal depression (if I can’t get rescue meds)
- transcendental, meditative, high state
@brainablaze.bsky.social
- I bite the inside of my lip
- smell/taste hallucinations (so I thought I kept getting covid)
- tinnitus
- déjà vu
- jamais vu
- terror
- suicidal depression (if I can’t get rescue meds)
- transcendental, meditative, high state
@brainablaze.bsky.social
Good to see protestors in masks. I only share photos of protests where I can see masks. You care about keeping people alive and healthy or you don’t.
apnews.com/article/iowa...
apnews.com/article/iowa...
February 26, 2025 at 9:15 PM
Good to see protestors in masks. I only share photos of protests where I can see masks. You care about keeping people alive and healthy or you don’t.
apnews.com/article/iowa...
apnews.com/article/iowa...
Every post from every woman in every disability community: “Once I convinced my doctor I wasn’t lying…”
Except most of us never do convince them.
Except most of us never do convince them.
February 26, 2025 at 6:17 AM
Every post from every woman in every disability community: “Once I convinced my doctor I wasn’t lying…”
Except most of us never do convince them.
Except most of us never do convince them.
Keppra in AM and PM. I put it off until 11.59 AM.
Maybe it’ll be less bad if I take it with junk food, that I won’t remember buying.
I can feel it hit already. I can feel seizures too. I feel how I imagine Victorian ladies felt when they kept fainting because they had tight corsets, flu and TB.
Maybe it’ll be less bad if I take it with junk food, that I won’t remember buying.
I can feel it hit already. I can feel seizures too. I feel how I imagine Victorian ladies felt when they kept fainting because they had tight corsets, flu and TB.
February 24, 2025 at 12:22 PM
Keppra in AM and PM. I put it off until 11.59 AM.
Maybe it’ll be less bad if I take it with junk food, that I won’t remember buying.
I can feel it hit already. I can feel seizures too. I feel how I imagine Victorian ladies felt when they kept fainting because they had tight corsets, flu and TB.
Maybe it’ll be less bad if I take it with junk food, that I won’t remember buying.
I can feel it hit already. I can feel seizures too. I feel how I imagine Victorian ladies felt when they kept fainting because they had tight corsets, flu and TB.
Day 1 of Keppra was hard going. Can’t sleep. Like flu now.
The day itself was 60 hours long but all I remember is vivid, sepia memories from 9 years ago.
I was a different person. Why do I remember like I was in love with him? I wasn’t.
The inventor of Keppra doesn’t know how the fuck it works.
The day itself was 60 hours long but all I remember is vivid, sepia memories from 9 years ago.
I was a different person. Why do I remember like I was in love with him? I wasn’t.
The inventor of Keppra doesn’t know how the fuck it works.
February 23, 2025 at 5:40 AM
Day 1 of Keppra was hard going. Can’t sleep. Like flu now.
The day itself was 60 hours long but all I remember is vivid, sepia memories from 9 years ago.
I was a different person. Why do I remember like I was in love with him? I wasn’t.
The inventor of Keppra doesn’t know how the fuck it works.
The day itself was 60 hours long but all I remember is vivid, sepia memories from 9 years ago.
I was a different person. Why do I remember like I was in love with him? I wasn’t.
The inventor of Keppra doesn’t know how the fuck it works.
I just took dose 1 of Keppra, my new epilepsy med. Worst odds for psych side-effects I’ve ever seen.
More scared of this than any drug I ever took in my past life. PTSD history means they shouldn’t even have prescribed it to me because of the risk.
If this goes wrong, nice knowing you, Bluesky. 🫡
More scared of this than any drug I ever took in my past life. PTSD history means they shouldn’t even have prescribed it to me because of the risk.
If this goes wrong, nice knowing you, Bluesky. 🫡
![drugs.com screenshot of side effects
Psychiatric
• Very common (10% or more): Non-psychotic behavioral symptoms (up to 38%), psychotic symptoms (up to 17%)
• Common (1% to 10%): Depression, nervousness, amnesia, anxiety, hostility, emotional lability, irritability, mood swings, hypersomnia, insomnia, apathy, tearfulness, negativism
• Postmarketing reports: Panic attack[Ref]
In studies, non-psychotic behavioral symptoms (reported as aggression, agitation, anger, anxiety, apathy, depersonalization, depression, emotional lability, hostility, hyperkinesias, irritability, nervousness, neurosis, and personality disorder) were reported in 13% of adults and 38% of pediatric patients aged 4 to 16 years compared to 6% and 19%, respectively in placebo patients. In patients less than 4 years old, irritability was reported in 12% compared to 0% in placebo patients. In adult patients, behavioral symptoms resulted in dose reduction or discontinuation 0.8% and 1.7% of patients, respectively. Dose reduction or discontinuation due to behavioral symptoms occurred in 11% of pediatric patients.
In studies, psychotic symptoms were reported in 1%, 2%, and 17% of patients receiving this drug aged adult, 4 to 16 years old, and less than 4 years compared to 0.2%, 2%, and 5% in placebo patients, respectively. [Ref]](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:syucwtdg6qk7agtzlgnzxnzd/bafkreigzolhgd23yg66pjpxs7yaoplrtsjfosor3k4v5olrmu5xpifdyay@jpeg)
February 21, 2025 at 1:39 PM
I just took dose 1 of Keppra, my new epilepsy med. Worst odds for psych side-effects I’ve ever seen.
More scared of this than any drug I ever took in my past life. PTSD history means they shouldn’t even have prescribed it to me because of the risk.
If this goes wrong, nice knowing you, Bluesky. 🫡
More scared of this than any drug I ever took in my past life. PTSD history means they shouldn’t even have prescribed it to me because of the risk.
If this goes wrong, nice knowing you, Bluesky. 🫡
Little badges like this with queer flag masks or slogans? Wait, what do you call badges where you are? Pins maybe…
February 21, 2025 at 2:14 AM
Little badges like this with queer flag masks or slogans? Wait, what do you call badges where you are? Pins maybe…
There’s a shadow on my bedroom ceiling that looks like the guy from Metamorphosis by Kafka, when he wakes up as the misjudged insect in a human world.
4 am. I’ve been staring at it for 4 hours but I can’t amass the energy or inclination to remove it. I’m starting to identify with it.
4 am. I’ve been staring at it for 4 hours but I can’t amass the energy or inclination to remove it. I’m starting to identify with it.
February 10, 2025 at 4:07 AM
There’s a shadow on my bedroom ceiling that looks like the guy from Metamorphosis by Kafka, when he wakes up as the misjudged insect in a human world.
4 am. I’ve been staring at it for 4 hours but I can’t amass the energy or inclination to remove it. I’m starting to identify with it.
4 am. I’ve been staring at it for 4 hours but I can’t amass the energy or inclination to remove it. I’m starting to identify with it.
99.999% of doctors shouldn’t be allowed near patients.
February 9, 2025 at 8:43 PM
99.999% of doctors shouldn’t be allowed near patients.
omg look at the prevalence of psych side-effects of Keppra, an epilepsy med I start soon.
Sites aimed at patients dangerously minimise this but the ones aimed at doctors… Fuuuck. Those percentages.
I think I’ll do a diary 3x a day to interrogate whether I want to k i l l myself or my neighbours?
Sites aimed at patients dangerously minimise this but the ones aimed at doctors… Fuuuck. Those percentages.
I think I’ll do a diary 3x a day to interrogate whether I want to k i l l myself or my neighbours?
![drugs.com
Psychiatric symptoms
• Very common (10% or more): Non-psychotic behavioral symptoms (up to 38%), psychotic symptoms (up to 17%)
• Common (1% to 10%): Depression, nervousness, amnesia, anxiety, hostility, emotional lability, irritability, mood swings, hypersomnia, insomnia, apathy, tearfulness, negativism
• Postmarketing reports: Panic attack(Ref]
In studies, non-psychotic behavioral symptoms (reported as aggression, agitation, anger, anxiety, apathy, depersonalization, depression, emotional lability, hostility, hyperkinesias, irritability, nervousness, neurosis, and personality disorder) were reported in 13% of adults and 38% of pediatric patients aged 4 to 16 years compared to 6% and 19%, respectively in placebo patients. In patients less than 4 years old, irritability was reported in 12% compared to 0% in placebo patients. In adult patients, behavioral symptoms resulted in dose reduction or discontinuation 0.8% and 1.7% of patients, respectively. Dose reduction or discontinuation due to behavioral symptoms occurred in 11% of pediatric patients.
In studies, psychotic symptoms were reported in 1%, 2%, and 17% of patients receiving this drug aged adult, 4 to 16 years old, and less than 4 years compared to 0.2%, 2%, and 5% in placebo patients, respectively.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:syucwtdg6qk7agtzlgnzxnzd/bafkreiek6zkpaxvqywngcs7uajcr4pr7jgilpib2z3t5bb7jtggiygaim4@jpeg)
February 9, 2025 at 12:15 AM
omg look at the prevalence of psych side-effects of Keppra, an epilepsy med I start soon.
Sites aimed at patients dangerously minimise this but the ones aimed at doctors… Fuuuck. Those percentages.
I think I’ll do a diary 3x a day to interrogate whether I want to k i l l myself or my neighbours?
Sites aimed at patients dangerously minimise this but the ones aimed at doctors… Fuuuck. Those percentages.
I think I’ll do a diary 3x a day to interrogate whether I want to k i l l myself or my neighbours?