Brainstorming Brain Fog PEM Shielders

[heapsreal]

Once you're severe, though, I don't think most of the symptoms ever go away no matter how much you rest.

I guess what I'm trying to say is you don't have a choice but to rest. Sometimes it's a mind thing and you want to get moving as you don't want to seem lazy and or things you need to do. This is when you have to realise you're up the creek without a paddle so just go along for the ride/rest and hard as it is, let those worries of feeling lazy or things that need doing to just wait.
Relaxation can be hard, trying to get into a parasympathetic state so your body can rest adequately.
I agree , alot of semantics but it can make it hard to understand what one means if they say brain fog but mean a crash. The 2 go together I guess but brain fog can be on its own also. Either way we need a cure👍

 

[Wishful]

are you near a river?

My cabin is next to a creek, ~25' wide. I get to watch beavers, otters, and waterfowl (and their babies!) swim by. It's an old winding creek, so canoeing--or walking when it's frozen--is about Pi times the bird-flight length. One winter I walked downstream several km, crossing 26 beaver dams. I tried again a few days ago, but I discovered that the creek got shallower and the ice got thinner. Oopsie! Just got a bit of my boot-tops soaked. The creek disappears into a completely eutrophied lake (big moss sponge), then reappears a few hundred m further. The muskeg around it is not all that fun to hike through, nor all that interesting (seen one runty black spruce, seen 'em all).

I liked to think I had good orientation skills (Don't we all?), but several times I found I'd gone in circles, so my skills are not that great.

-31C this morning, so I'm not going for a long walk.

 

[Wishful]

It hasn't made me able to miraculously walk.

I didn't have a physical inability to walk; it was just that the aches made it unpleasant, so why force myself to suffer? LDN made walking enjoyable again.

 

[wabi-sabi]

I didn't have a physical inability to walk

Sadly, I do- well, you know the POTS thing.

 

[hapl808]

Sadly, I do- well, you know the POTS thing.

Same here, but issues are more muscular. If I had to guess, that aspect for me is more a post polio / general enterovirus kind of thing, but either way it's all just hoping for hope's sake that something changes. Not much else to do when I can't stand up, can't really talk on the phone, can't work on the computer too much, etc.

 

[wabi-sabi]

it's all just hoping for hope's sake that something changes.

The scientists working on this give me great hope. That's the light in the darkness for me. It's still hard on the crash days. But I try to think of hope as an active choice I can make in my situation, nit just a passive thing that happens to me. Of course, good science news helps a lot to keep hope up.

 

[wabi-sabi]

Mestinon helps me a bit. Not that I don't crash, but it seems to have expanded my energy envelope a little-By no means normal, but every little bit better helps.

 

[hapl808]

The scientists working on this give me great hope. That's the light in the darkness for me. It's still hard on the crash days. But I try to think of hope as an active choice I can make in my situation, nit just a passive thing that happens to me. Of course, good science news helps a lot to keep hope up.

Yeah. I find it harder these days as the 'non-crash' days I'm still unable to walk, can't talk on the phone too much or work on the computer or the following days will be a crash, etc. When I was 'moderate' maybe 5+ years ago, having difficulty walking and getting tired easily was frustrating, but seems like heaven compared to these days. Back then if I socialized for a few hours I'd have a mild crash. Now a one-hour videochat would be a 7+ day crash.

 

[Rufous McKinney]

crossing 26 beaver dams.

How Wonderful.

otters,

I"d never want to leave

a completely eutrophied lake (big moss sponge)

Eutrophied? Wonder why?

Could it be a floating bog or marsh or Spagnum thing?

I liked to think I had good orientation skills (Don't we all?)

I did a career that included Lost can not EVER happen. And often I was alone in rugged remote wildnesss, no trails. Did not use trails.

In fact, the closest I came to seriously lost as due to the other person refusing to believe me.

So I sat down on a giant rock and refused to move.

Never lost perfect compass can read any map has now become something else entirely in my case.

And its Item Six in the Do You Have Early Dementia test!

Oh great, that started up 15 years ago for me.

 

[Rufous McKinney]

I had good orientation skill

hippocampus

 

[Wishful]

Eutrophied? Wonder why?

Normal progression. Big holes full of water collect silt, in which vegetation grows, and it all builds up, and eventually it becomes a shallow depression full of rich soil. All the lakes nearby are very shallow. Loons only stop by for a rest, since it's too shallow for diving. Ducks, geese, and swans seem happy. Lotsa froggies too.

A few years ago a seismic crew came through, so I had lots of freshly-cleared trails to explore. That was also the winter I discovered the wonders of LDN, so I had a great time hiking all over. Now quite a few are blocked by fallen trees, so it's not quite so convenient. I'm still quite pleased that I moved here, rather than staying in Vancouver. Wolf packs are nicer than human gangs.

 

[Wishful]

Sadly, I do- well, you know the POTS thing.

That is sad, from the perspective of someone who does enjoy hiking in the woods. The point about my posting about LDN allowing me to hike again is that even when you're going through a worse phase, it's always possible for your ME to change again, or to discover some new food or whatever that lets you improve again. ME is not--in general--permanent degradation.

 

[Rufous McKinney]

it becomes a shallow depression full of rich soil. All the lakes nearby are very shallow.

sounds like the isolated small lakes in the Sierras....they often look like tea, as fallen logs and leaves and things lie about decaying. They don't get "flushed out".

They are important for frogs, as they aren't supposed to have fish (they used to stock such places with trout, which impacted frogs)

I'm still quite pleased that I moved here, rather than staying in Vancouver. Wolf packs are nicer than human gangs.

Smart Move. Agree, give me wolves any day. I did a weekend visit to Vancouver and was there on Easter Sunday. I also did 5 days in Victoria for a conference, I could have stayed around that area indefinitely.