Mind over MCAS
@mindovermcas.bsky.social
I am a cognitive scientist who suffers from episodes of severe cognitive dysfunction (Mast Cell Activation Syndrome). Never a dull moment.
#MCAS #Chronicillness #dysautonomia #disability #ME/CFS
#MCAS #Chronicillness #dysautonomia #disability #ME/CFS
As someone with a chronic illness that affects my nervous system, I break a lot of dishes. I refuse to eat off of plastic (for now) so I keep a mini shop vac in the kitchen to help with cleanup. 💪
October 30, 2025 at 10:47 PM
As someone with a chronic illness that affects my nervous system, I break a lot of dishes. I refuse to eat off of plastic (for now) so I keep a mini shop vac in the kitchen to help with cleanup. 💪
Doctors predict I have about 10 years to live, assuming no unexpected issues. 10 years is long enough that I still have to contribute to my 401K in case of a medical breakthrough, but short enough that I can talk myself out of buying any new clothes.
September 29, 2025 at 3:59 PM
Doctors predict I have about 10 years to live, assuming no unexpected issues. 10 years is long enough that I still have to contribute to my 401K in case of a medical breakthrough, but short enough that I can talk myself out of buying any new clothes.
Would you rather be constantly hungry or constantly itchy for the rest of your life?
Sometimes my symptoms/side effects tradeoffs are straightforward and sometimes they make really good "would you rather" questions.
Sometimes my symptoms/side effects tradeoffs are straightforward and sometimes they make really good "would you rather" questions.
May 19, 2025 at 4:37 PM
Would you rather be constantly hungry or constantly itchy for the rest of your life?
Sometimes my symptoms/side effects tradeoffs are straightforward and sometimes they make really good "would you rather" questions.
Sometimes my symptoms/side effects tradeoffs are straightforward and sometimes they make really good "would you rather" questions.
For 5 years, I've gone to a doctor's office every 4 weeks to receive an injectable medication. Starting this month, I'm allowed to administer the shots myself at home!
This will cut my appointments down by 20-30%. I've never been so giddy while jabbing my legs with needles. 💉✨
This will cut my appointments down by 20-30%. I've never been so giddy while jabbing my legs with needles. 💉✨
March 19, 2025 at 10:47 PM
For 5 years, I've gone to a doctor's office every 4 weeks to receive an injectable medication. Starting this month, I'm allowed to administer the shots myself at home!
This will cut my appointments down by 20-30%. I've never been so giddy while jabbing my legs with needles. 💉✨
This will cut my appointments down by 20-30%. I've never been so giddy while jabbing my legs with needles. 💉✨
"The older I get, the better I was."
March 16, 2025 at 6:29 PM
"The older I get, the better I was."
As a chronically ill person, I hate the advice, "Listen to your body. It knows what it needs."
My body says it needs Oreos, cigarettes, and to never get out of bed again.
Instead, I treat my body like I'd treat a toddler. It doesn't know what's best. Sometimes it gives useful clues.
My body says it needs Oreos, cigarettes, and to never get out of bed again.
Instead, I treat my body like I'd treat a toddler. It doesn't know what's best. Sometimes it gives useful clues.
March 14, 2025 at 10:42 PM
As a chronically ill person, I hate the advice, "Listen to your body. It knows what it needs."
My body says it needs Oreos, cigarettes, and to never get out of bed again.
Instead, I treat my body like I'd treat a toddler. It doesn't know what's best. Sometimes it gives useful clues.
My body says it needs Oreos, cigarettes, and to never get out of bed again.
Instead, I treat my body like I'd treat a toddler. It doesn't know what's best. Sometimes it gives useful clues.
Stages of nihilism:
Life is meaningless. 😱
Life is meaningless. 😞
Life is meaningless. 🫤
Life is meaningless. 🤫
Life is meaningless. 🥳
Life is meaningless. 😱
Life is meaningless. 😞
Life is meaningless. 🫤
Life is meaningless. 🤫
Life is meaningless. 🥳
March 11, 2025 at 5:25 PM
Stages of nihilism:
Life is meaningless. 😱
Life is meaningless. 😞
Life is meaningless. 🫤
Life is meaningless. 🤫
Life is meaningless. 🥳
Life is meaningless. 😱
Life is meaningless. 😞
Life is meaningless. 🫤
Life is meaningless. 🤫
Life is meaningless. 🥳
Things I had to give up due to illness: cheese, bread, wearing shorts, living independently, spontaneity, scented detergent, my relationship with my mom, camping, cinnamon, my career goals, my dog, marathon training, good haircuts, the partner I loved, peanut butter cups, scotch.
February 28, 2025 at 8:52 PM
Things I had to give up due to illness: cheese, bread, wearing shorts, living independently, spontaneity, scented detergent, my relationship with my mom, camping, cinnamon, my career goals, my dog, marathon training, good haircuts, the partner I loved, peanut butter cups, scotch.
The following are surprise "boss battles" in the game of chronic illnesses: showering, hanging a picture on a wall, stairs, sitting on a stool, shopping at a mall, navigating the airport, bringing in groceries, putting on boots with laces, the line at the pharmacy...what else am I missing? 😆
February 26, 2025 at 1:28 AM
The following are surprise "boss battles" in the game of chronic illnesses: showering, hanging a picture on a wall, stairs, sitting on a stool, shopping at a mall, navigating the airport, bringing in groceries, putting on boots with laces, the line at the pharmacy...what else am I missing? 😆
When I experience cognitive dysfunction and fatigue at the same time, I have "glitchy dreams." Imagine rapid flashes of emotions, sounds, & images with no story line.
I can also have sleep paralysis where my brain is awake but my body is still paralyzed.
But thx, I'm sure yoga will fix me.
I can also have sleep paralysis where my brain is awake but my body is still paralyzed.
But thx, I'm sure yoga will fix me.
February 24, 2025 at 8:33 PM
When I experience cognitive dysfunction and fatigue at the same time, I have "glitchy dreams." Imagine rapid flashes of emotions, sounds, & images with no story line.
I can also have sleep paralysis where my brain is awake but my body is still paralyzed.
But thx, I'm sure yoga will fix me.
I can also have sleep paralysis where my brain is awake but my body is still paralyzed.
But thx, I'm sure yoga will fix me.
I am a trained scientist. So WHY do I insist on repeating the same experiment every 3-6 months where I try to fight ME/CFS with caffeine pills?? It always seems like such a good idea. And then I wind up stuck in bed while my cardiovascular system re-enacts a John Wick movie.
February 19, 2025 at 3:25 AM
I am a trained scientist. So WHY do I insist on repeating the same experiment every 3-6 months where I try to fight ME/CFS with caffeine pills?? It always seems like such a good idea. And then I wind up stuck in bed while my cardiovascular system re-enacts a John Wick movie.
One of the toughest things about having MCAS is the randomness. One day I can jog a mile, the next I'm in a wheelchair.
Reminds me of old psych experiments where rats were shocked at random intervals. Eventually the rats withdraw, become apathetic, and stop trying to escape when they can get free.
Reminds me of old psych experiments where rats were shocked at random intervals. Eventually the rats withdraw, become apathetic, and stop trying to escape when they can get free.
February 18, 2025 at 12:20 AM
One of the toughest things about having MCAS is the randomness. One day I can jog a mile, the next I'm in a wheelchair.
Reminds me of old psych experiments where rats were shocked at random intervals. Eventually the rats withdraw, become apathetic, and stop trying to escape when they can get free.
Reminds me of old psych experiments where rats were shocked at random intervals. Eventually the rats withdraw, become apathetic, and stop trying to escape when they can get free.
Doc: Any mood problems?
Me: I feel like the world is falling apart so I dissociate or the depression is too much. Isn't that everyone right now?
Doc: Yes. But you are also deficient in vitamin D.
PSA to check your vitamin D levels, folks. It won't change the world but it's a great distraction.
Me: I feel like the world is falling apart so I dissociate or the depression is too much. Isn't that everyone right now?
Doc: Yes. But you are also deficient in vitamin D.
PSA to check your vitamin D levels, folks. It won't change the world but it's a great distraction.
February 6, 2025 at 5:11 AM
Doc: Any mood problems?
Me: I feel like the world is falling apart so I dissociate or the depression is too much. Isn't that everyone right now?
Doc: Yes. But you are also deficient in vitamin D.
PSA to check your vitamin D levels, folks. It won't change the world but it's a great distraction.
Me: I feel like the world is falling apart so I dissociate or the depression is too much. Isn't that everyone right now?
Doc: Yes. But you are also deficient in vitamin D.
PSA to check your vitamin D levels, folks. It won't change the world but it's a great distraction.
Dysautonomia is bad today. I have two options: 1) reschedule six meetings, or 2) join from bed without camera and hope that Zoom filters out the sound of my pneumatic compression boots. I'm rolling with 2 unless my brain starts misbehaving.
February 3, 2025 at 5:38 PM
Dysautonomia is bad today. I have two options: 1) reschedule six meetings, or 2) join from bed without camera and hope that Zoom filters out the sound of my pneumatic compression boots. I'm rolling with 2 unless my brain starts misbehaving.
My chronic illness makes a lot of choices for me. What to eat, when to sleep, when to sit down, when to wear certain types of clothes, when to work...It's like a personal assistant. For poor people.
January 26, 2025 at 7:49 PM
My chronic illness makes a lot of choices for me. What to eat, when to sleep, when to sit down, when to wear certain types of clothes, when to work...It's like a personal assistant. For poor people.
Intermittent cognitive dysfunction is a funny thing. I had a few hours today where my brain was partially offline and my partner found me cowering away from a few books because they weren't in a stack. It was unbearably distressing.
And now here I am with a headache reading one of those books.
And now here I am with a headache reading one of those books.
January 23, 2025 at 12:37 AM
Intermittent cognitive dysfunction is a funny thing. I had a few hours today where my brain was partially offline and my partner found me cowering away from a few books because they weren't in a stack. It was unbearably distressing.
And now here I am with a headache reading one of those books.
And now here I am with a headache reading one of those books.
Healthy people on vacation: "I'm going to gain 5 pounds and take a nap on the beach!"
Chronic illness vacation: "I'm going to try not to lose 5 pounds and stay awake at the beach!"
Chronic illness vacation: "I'm going to try not to lose 5 pounds and stay awake at the beach!"
January 19, 2025 at 11:50 PM
Healthy people on vacation: "I'm going to gain 5 pounds and take a nap on the beach!"
Chronic illness vacation: "I'm going to try not to lose 5 pounds and stay awake at the beach!"
Chronic illness vacation: "I'm going to try not to lose 5 pounds and stay awake at the beach!"
As someone with chronic fatigue, I now have dreams where I am too tired to do anything.
January 10, 2025 at 3:17 PM
As someone with chronic fatigue, I now have dreams where I am too tired to do anything.
As a researcher, I track all of my symptoms, etc. throughout the year. 2024 was a good year.
38% of days were "poor health days" (down 4% from 2023). My definition of a bad day is 3+ hours of severe physical or cognitive difficulties.
33 doc visits. 22 therapy sessions.
8,576 pills. 61 shots.
38% of days were "poor health days" (down 4% from 2023). My definition of a bad day is 3+ hours of severe physical or cognitive difficulties.
33 doc visits. 22 therapy sessions.
8,576 pills. 61 shots.
January 8, 2025 at 7:05 PM
As a researcher, I track all of my symptoms, etc. throughout the year. 2024 was a good year.
38% of days were "poor health days" (down 4% from 2023). My definition of a bad day is 3+ hours of severe physical or cognitive difficulties.
33 doc visits. 22 therapy sessions.
8,576 pills. 61 shots.
38% of days were "poor health days" (down 4% from 2023). My definition of a bad day is 3+ hours of severe physical or cognitive difficulties.
33 doc visits. 22 therapy sessions.
8,576 pills. 61 shots.
Let's play: Is it my chronic fatigue or am I just very tired?
1. Am I also cold or shaking? Fatigue.
2. If I force myself to move around, does it get a lot worse? Fatigue.
3. Does getting a hug from a loved one sound exhausting? Fatigue.
4. Are bright colors or sudden sounds painful? Fatigue.
1. Am I also cold or shaking? Fatigue.
2. If I force myself to move around, does it get a lot worse? Fatigue.
3. Does getting a hug from a loved one sound exhausting? Fatigue.
4. Are bright colors or sudden sounds painful? Fatigue.
December 30, 2024 at 5:31 PM
Let's play: Is it my chronic fatigue or am I just very tired?
1. Am I also cold or shaking? Fatigue.
2. If I force myself to move around, does it get a lot worse? Fatigue.
3. Does getting a hug from a loved one sound exhausting? Fatigue.
4. Are bright colors or sudden sounds painful? Fatigue.
1. Am I also cold or shaking? Fatigue.
2. If I force myself to move around, does it get a lot worse? Fatigue.
3. Does getting a hug from a loved one sound exhausting? Fatigue.
4. Are bright colors or sudden sounds painful? Fatigue.
When someone asks me about my illness and I tell them I have severe cognitive dysfunction and often require mobility aids: "That's not so bad. It could be worse..."
When I casually mention that I've only eaten steak, apples, lettuce, and salt for two years: "OMFG, I WOULD DIE. ARE YOU DYING??"
When I casually mention that I've only eaten steak, apples, lettuce, and salt for two years: "OMFG, I WOULD DIE. ARE YOU DYING??"
December 29, 2024 at 10:28 PM
When someone asks me about my illness and I tell them I have severe cognitive dysfunction and often require mobility aids: "That's not so bad. It could be worse..."
When I casually mention that I've only eaten steak, apples, lettuce, and salt for two years: "OMFG, I WOULD DIE. ARE YOU DYING??"
When I casually mention that I've only eaten steak, apples, lettuce, and salt for two years: "OMFG, I WOULD DIE. ARE YOU DYING??"
Reposted by Mind over MCAS
Reposted by Mind over MCAS
December 28, 2024 at 11:38 AM