The Real McCoy
@rippermd41.bsky.social
My life runs by the Murphy’s Law of illness: If something can go wrong, it will go wrong. Latest one is #MECFS but the laundry list is long. Live in New England
People really have no idea how many of us were disabled by infections pre-Covid.
EBV was the virus that kicked off my ME.
EBV was the virus that kicked off my ME.
November 16, 2025 at 8:36 AM
People really have no idea how many of us were disabled by infections pre-Covid.
EBV was the virus that kicked off my ME.
EBV was the virus that kicked off my ME.
He’s the the most active dachshund we ever owned.
We play fetch 2-3 hours a day.
Walks only energize him more.
Of course he had to bond with the person with #MECFS 🤦🏻♀️
Ollie on the other hand sleeps all day.
We play fetch 2-3 hours a day.
Walks only energize him more.
Of course he had to bond with the person with #MECFS 🤦🏻♀️
Ollie on the other hand sleeps all day.
November 16, 2025 at 8:17 AM
He’s the the most active dachshund we ever owned.
We play fetch 2-3 hours a day.
Walks only energize him more.
Of course he had to bond with the person with #MECFS 🤦🏻♀️
Ollie on the other hand sleeps all day.
We play fetch 2-3 hours a day.
Walks only energize him more.
Of course he had to bond with the person with #MECFS 🤦🏻♀️
Ollie on the other hand sleeps all day.
Finn came to us from the rescue with this game. He takes a toy, covers it with the blanket to chew on it and then like a plush toy he destroys it.
We supervise to avoid harm, but no matter how many toys we get he goes back to this.
Here’s Finn with one of our frogs.
We supervise to avoid harm, but no matter how many toys we get he goes back to this.
Here’s Finn with one of our frogs.
November 16, 2025 at 8:17 AM
Finn came to us from the rescue with this game. He takes a toy, covers it with the blanket to chew on it and then like a plush toy he destroys it.
We supervise to avoid harm, but no matter how many toys we get he goes back to this.
Here’s Finn with one of our frogs.
We supervise to avoid harm, but no matter how many toys we get he goes back to this.
Here’s Finn with one of our frogs.
Lastly this is of course just my personal experience and not medical advice.
I found it helpful to keep a sleep journal to show my doctors. I documented sleep quality, duration and what I tried.
That way we can see what meds, supplements, behavior changes help and what doesn’t.
9/X
I found it helpful to keep a sleep journal to show my doctors. I documented sleep quality, duration and what I tried.
That way we can see what meds, supplements, behavior changes help and what doesn’t.
9/X
November 16, 2025 at 5:58 AM
Lastly this is of course just my personal experience and not medical advice.
I found it helpful to keep a sleep journal to show my doctors. I documented sleep quality, duration and what I tried.
That way we can see what meds, supplements, behavior changes help and what doesn’t.
9/X
I found it helpful to keep a sleep journal to show my doctors. I documented sleep quality, duration and what I tried.
That way we can see what meds, supplements, behavior changes help and what doesn’t.
9/X
I tried the conventional sleep wisdom and it didn’t work.
Giving myself permission to break from it was what my body needed.
After all #MECFS is anything but conventional.
8/
Giving myself permission to break from it was what my body needed.
After all #MECFS is anything but conventional.
8/
November 16, 2025 at 5:58 AM
I tried the conventional sleep wisdom and it didn’t work.
Giving myself permission to break from it was what my body needed.
After all #MECFS is anything but conventional.
8/
Giving myself permission to break from it was what my body needed.
After all #MECFS is anything but conventional.
8/
#MECFS really is a force to be reckoned with.
There’s no pushing through it.
The more you fight it the more it comes around to bite you in the ass.
7/
There’s no pushing through it.
The more you fight it the more it comes around to bite you in the ass.
7/
November 16, 2025 at 5:58 AM
#MECFS really is a force to be reckoned with.
There’s no pushing through it.
The more you fight it the more it comes around to bite you in the ass.
7/
There’s no pushing through it.
The more you fight it the more it comes around to bite you in the ass.
7/
It’s a huge privilege that I can even try this.
My husband keeps things running and gets our kid to school on time.
I’m too severe to work but we can get by without my income.
But not everyone has caregivers or the luxury of not working.
#MECFS
6/
My husband keeps things running and gets our kid to school on time.
I’m too severe to work but we can get by without my income.
But not everyone has caregivers or the luxury of not working.
#MECFS
6/
November 16, 2025 at 5:58 AM
It’s a huge privilege that I can even try this.
My husband keeps things running and gets our kid to school on time.
I’m too severe to work but we can get by without my income.
But not everyone has caregivers or the luxury of not working.
#MECFS
6/
My husband keeps things running and gets our kid to school on time.
I’m too severe to work but we can get by without my income.
But not everyone has caregivers or the luxury of not working.
#MECFS
6/
Since I gave in to my odd sleep patterns I’m actually sleeping more.
Not a ton more and it still feels unrefreshing, but I’ll take it.
I’m using less energy. The nighttime hours are so quiet and dark, less stress, and I tend to do lower energy activities.
#MECFS
5/
Not a ton more and it still feels unrefreshing, but I’ll take it.
I’m using less energy. The nighttime hours are so quiet and dark, less stress, and I tend to do lower energy activities.
#MECFS
5/
November 16, 2025 at 5:58 AM
Since I gave in to my odd sleep patterns I’m actually sleeping more.
Not a ton more and it still feels unrefreshing, but I’ll take it.
I’m using less energy. The nighttime hours are so quiet and dark, less stress, and I tend to do lower energy activities.
#MECFS
5/
Not a ton more and it still feels unrefreshing, but I’ll take it.
I’m using less energy. The nighttime hours are so quiet and dark, less stress, and I tend to do lower energy activities.
#MECFS
5/
So I gave in a few months ago.
If I fall asleep at 5 am 🤷🏻♀️
If I don’t fully wake up until 3 pm 🤷🏻♀️
Perhaps my sleep schedule will keep running later* 🤷🏻♀️
Like my husband said, “does it really matter?”
(This is a technique for getting back to a “regular” sleep schedule)
#MECFS
4/
If I fall asleep at 5 am 🤷🏻♀️
If I don’t fully wake up until 3 pm 🤷🏻♀️
Perhaps my sleep schedule will keep running later* 🤷🏻♀️
Like my husband said, “does it really matter?”
(This is a technique for getting back to a “regular” sleep schedule)
#MECFS
4/
November 16, 2025 at 5:58 AM
So I gave in a few months ago.
If I fall asleep at 5 am 🤷🏻♀️
If I don’t fully wake up until 3 pm 🤷🏻♀️
Perhaps my sleep schedule will keep running later* 🤷🏻♀️
Like my husband said, “does it really matter?”
(This is a technique for getting back to a “regular” sleep schedule)
#MECFS
4/
If I fall asleep at 5 am 🤷🏻♀️
If I don’t fully wake up until 3 pm 🤷🏻♀️
Perhaps my sleep schedule will keep running later* 🤷🏻♀️
Like my husband said, “does it really matter?”
(This is a technique for getting back to a “regular” sleep schedule)
#MECFS
4/
Exercise? Nope, that triggers PEM which makes my sleep worse for days-years.
Only use your bed for sleep? 🤣
That “tip” is laughable as someone mostly bedbound.
#MECFS
3/
Only use your bed for sleep? 🤣
That “tip” is laughable as someone mostly bedbound.
#MECFS
3/
November 16, 2025 at 5:58 AM
Exercise? Nope, that triggers PEM which makes my sleep worse for days-years.
Only use your bed for sleep? 🤣
That “tip” is laughable as someone mostly bedbound.
#MECFS
3/
Only use your bed for sleep? 🤣
That “tip” is laughable as someone mostly bedbound.
#MECFS
3/
Conventional medical wisdom says I should go to bed at the same time every night and set an alarm to wake up at the same time.
Tried that. It left me more sleep deprived 🫠
#MECFS
2/
Tried that. It left me more sleep deprived 🫠
#MECFS
2/
November 16, 2025 at 5:58 AM
Conventional medical wisdom says I should go to bed at the same time every night and set an alarm to wake up at the same time.
Tried that. It left me more sleep deprived 🫠
#MECFS
2/
Tried that. It left me more sleep deprived 🫠
#MECFS
2/