u/LycheeDance

I get the everyday techniques, eg you say to yourself my body is healthy my brain is safe, self-dialogue etc. But what about when objectively things occur - e.g you don’t sleep well multiple nights or you exercise much more than usual. There are times when no amount of compassion is going to change how the body is feeling because something has definitively changed (albeit not in a dangerous way) even for someone without a neuroplastic issue. How do you decide it’s best to try and stretch previous limits and reassure vs say actually I need to slow down again in x situation eg (lack of sleep).

It seems obvious, but it’s not if you have a neuroplastic condition because it will often overrespond so it’s tough to know how much to slow down if at all If you’ve underslept hours 2-3 nights in a row, obviously even a ‘normal’ person would feel different than if they have 8 hours. Or when exercising more, a normal person might feel some sensations indicating sore muscles.

How do you manage, in terms of distinguishing and self talk? Often obviously objective things can happen at the same time as neuroplastic thing so it gets murky. What techniques are people using to navigate these kinds of situations?

For example, if I’ve slept 5 hours 2-3 nights in a row, obviously even a ‘normal’ person would feel different than if they have 8 hours. Or when exercising more, a normal person might feel some sensations in muscles.

How do you manage, in terms of distinguishing and self talk?

My brother just visited my parents and I made the effort to travel there despite the pain and exhaustion it would cause me. We were pretty close when I was a kid and into my early twenties. I always felt he was on my side and rooting for me. But since I’ve been ill he’s been very disbelieving. And the last few years, I feel this underlying disdain towards me. He once visited my city after a year away and didn’t even contact me to visit. He rarely initiates contact in the months between visits. I asked him does he ever think, I wonder how she’s doing, I’ll give her a call. His answer was that he could sense my illness even when I wasn’t talking about it and essentially it bummed him out so he avoided contact. That it was triggering for him. I told him that made me feel pretty lousy as not only am I losing my life to illness but mostly losing my brother too. He didn’t say anything and didn’t even hug me when he left. It’s left me feeling pretty bereft.

I found a butterfly caught in an abandoned spiderweb, it was fighting to get out but the web was too sticky. I managed to get it out but it couldn’t fly as it was too covered in spiderweb strands. I started pulling off the sticky strands being careful not to hurt it. It took time and was very tricky as the adhesive was surprisingly strong. When it got a bit free it took off and I thought that would be that. Instead it flew back to my hand and I worked on the strands some more. It must have took off and came back to my hand a half a dozen more times to let me help it until it finally flew free out into the sunny morning. Was a special encounter.

I hate the question. Dislike lying but the truth is convoluted. Usually I say what I used to do or have done. I’m talking about those brief encounters like in taxis or even meeting new people (which I rarely do obvs).

What the title says really.

I have low BP also and am afraid to try topical minoxidil as I have super thin skin and absorb things as though I took it orally (it lowers BP)

Has anyone tried it or anything else that worked? Trying red light at the moment. Had a reaction to Rosemary oil.

I’m finding it really hard to find a reliable source of information about how much potassium if any is safe to have for people with POTS/dysautonomia.

The Internet in general seems to say that potassium is a really bad idea because of potent heart signalling interference. Other websites specifically on POTS either say you should have lots of potassium or they say it’s not necessary/proven. I’ve read posts on here saying 400mg put them in the hospital and other people saying they have three times that amount and are fine. I accidentally had a lot of potassium (800mg) in my first day of trying electrolytes and actually felt very good and slept well but then you get all these articles saying it’s dangerous to the heart.

A lot of the electrolyte brands that are recommended have high levels of potassium but then if you’re having it three or four times a day or maybe even more it can really add up. I personally have decided to make it on my own with salt and potassium chloride and magnesium malate because I’m sensitive to other ingredients and sweeteners.

I’ve also read that high levels of salt can flush out potassium, magnesium and calcium especially but I don’t see that talks about very much in terms of protecting your bone health.

My other question and thank you if you’ve got this far is does high-level of salt do any damage to the digestive tract long-term? I’ve read conflicting things on that. For me electrolytes don’t seem to do anything unless I have them in water on an empty stomach unfortunately.

Like many people here I have not had a lot of luck with asking doctors these questions so I am left to try and find reliable sources elsewhere.

Jesse was interviewed about 6 months ago on the Writers Block on Spectrum on Sirius with David Fricke. Would some lovely person record on voice memo or something and share it? 🥺 🙏 This app/interview isn’t available in Europe.
I’ve heard a snippet and it sounds so interesting.

https://www.siriusxm.ca/channels/the-spectrum/

Trying Clotrimazole cream and having some success where nothing else helped. Switching the solution as have long hair, hoping will be just as/more effective.

I’ve just had a virus, it made a nice change, weirdly I get less body aches when I’m mildly ill but now I’m getting better they are back.
Between CFS and ADHD I feel like I can’t do anything. I’m punished for things I do physically. And anything I start I know I won’t finish so what’s the point. Time goes like water. I feel like I’m just spending days waiting to eventually d-e. I’d like to live but all my efforts to bring me back to bed, distracting myself forever. It’s been this way almost 10 years.

Well if you’re looking for thrills
And you’re wanting to kill
But you don’t want to travel far
They’ll give you chemical spray
And in a couple days
You’ll be shooting women in their cars
If you’ve been prone to failure
And your life’s been hell
You’re entitled to some compensation
They’ll give you some federal immunity
Along with impunity
They’ll put you on location
Join ice
They’re only taking the best
Join ice
They’d hardly take any less
If you’re low on options and
Needing a plan
They’re in need of you needing to feel like a man
Join ice

I’ve been chronically ill 8 years but have only got one other virus during that time - Covid 4 years ago.

I read a lot of people with Lyme/ME don’t seem to get sick as much as normal people eg colds viruses etc.

6 weeks ago I got a mild virus and now again I got a virus again, this one a bit worse. Both times after stressful weeks but these past 8 years have been full of stress so that’s not new.

What do you think this might mean if anything?

Thanks

I have ADHD and staring at the wall is impossible for too long unless I’m in a major crash. Any ideas?

What the title says really. I had tiny doses of certain supplements for the same reason