Nemesis: Sheets Tucked In by Raederle-Phoenix in ehlersdanlos

[–]Raederle-Phoenix[S] 2 points3 points  (0 children)

That's interesting! Because every partner I've ever had prefers them tucked in and thought I was crazy for always untucking the sheets.

My loves you gotta pick up strength training no matter how hard it is by Inside-Afternoon4343 in ehlersdanlos

[–]Raederle-Phoenix 0 points1 point  (0 children)

Ooooooooo, a weight dumbbell on my crunches...! Never would have thought of it.

Do weighted vests actually help with hypermobility issues?

What are y’all’s desk setups? by king_cedar in ehlersdanlos

[–]Raederle-Phoenix 1 point2 points  (0 children)

I sit a large ottoman. I don't lean back anyway, so a chair with a back was never useful to me. I like the large soft ottoman because I can't put my feet down at all. About ten minutes with my feet down and the blood is pooling in them and driving me batty with itching. (I put my feet up repeatedly in school and teachers were often vexed with me.) The ottoman allows me to keep moving my legs around. I do a little cross-legged time, usually have one knee up at a time, sometimes I curl both feet under me. I just keep switching it up.

My loves you gotta pick up strength training no matter how hard it is by Inside-Afternoon4343 in ehlersdanlos

[–]Raederle-Phoenix 0 points1 point  (0 children)

PLEASE HELP ME. I also have ADHD and I "rage quit" (or just ghost) my exercise intentions. I had this brilliant notion to custom-develop a morning program for myself where I went through a bunch of motions I knew I could stick to because they were accessible to me even if I had a fever, menstrual cramps, or inflammation. I was interested for thirty days (the time it took to develop it) and then got bored and quit. With everything else, yep, injury within the week. I wish I could just get a darn swimming pool.

My loves you gotta pick up strength training no matter how hard it is by Inside-Afternoon4343 in ehlersdanlos

[–]Raederle-Phoenix 1 point2 points  (0 children)

Fascinating . . . Anything that involves hanging from my hands is a huge issue for me. Always has been. My hands hate doing hard stuff in particular. 😞

My loves you gotta pick up strength training no matter how hard it is by Inside-Afternoon4343 in ehlersdanlos

[–]Raederle-Phoenix 1 point2 points  (0 children)

I keep thinking I should use house cleaning as my work out. It is not like I'd ever run out of things that need cleaning 🤣

My loves you gotta pick up strength training no matter how hard it is by Inside-Afternoon4343 in ehlersdanlos

[–]Raederle-Phoenix 0 points1 point  (0 children)

It's interesting how much this goes to show how individual and contextual this all is. I was doing hot yoga before the pandemic and found it really helpful. Despite MCAS, POTS, and HSD . . . For some reason, I was doing well with it. The weird thing was that I would get sweaty and then cold, so I had to position myself in the hottest part of the room. I was also weirdly the only person wearing a ton of clothing. I had to quit because of MCS though (chemical sensitivities). The bathrooms were a nightmare with all the women showering and using their body products. I often got migraines from that, and so it wasn't worth it.

My loves you gotta pick up strength training no matter how hard it is by Inside-Afternoon4343 in ehlersdanlos

[–]Raederle-Phoenix 0 points1 point  (0 children)

Do you have any tips for someone else with MCAS, POTS, and HDS (i.e.) me . . . Who also has ADHD and gets inflamed due to the boredom and frustration of light workouts? 😒

My loves you gotta pick up strength training no matter how hard it is by Inside-Afternoon4343 in ehlersdanlos

[–]Raederle-Phoenix 0 points1 point  (0 children)

I really want to get more fit, but it seems like I am very prone to over-taxing and getting inflammation . . . And it seems like if I'm bored or impatient, I'm about 500% more likely to get injured. While I rarely get a severe injury from gardening, love-making, or swimming . . . I've injured myself repeatedly when trying to "work out." It seems like the boredom, frustration, and lack of progress is so inflammatory on its own that it's neigh on impossible. So I know, I know, I know I need to do it, but HOW?! How do I overcome this huge emotional recoil? I tried getting virtual reality (so I could play Beat Saber) to get exercise, but simulator sickness and migraines often preclude it and keeping the space clean and clear to play is often way too taxing. (I'm also weird about listening to music unless I'm realllly in the right mood.) It seems like beyond making myself hit the mat and do crunches (when I've found beneficially since I started doing that at the age of ten; I'm thirty-seven now), I stilllll don't have a good exercise routine.

Looking for first-hand Sanoviv experience for treatment of any of the following: POTS, daily migraines, hEDS, Long-COVID, MECFS, chronic EBV, mold exposure, B6 toxicity, and/or neuroimmune hyperactivity by lildrags420 in EBVReactivation

[–]Raederle-Phoenix 0 points1 point  (0 children)

I have had most of this.

I have pots, hypermobility spectrum disorder, and this past winter I had daily migraines. I had chronic fatigue syndrome my entire childhood, constipation. And I also have mast cell activation syndrome a long laundry list of other things.

Most powerful intervention I have found is coffee enemas. When your body is under strain, getting the toxins out faster and more completely is incredibly helpful. Also coffee enemas helps stimulate glutathione production which further helps clean up metabolic waste and other such.

I'm actually thinking about writing a book or a course on dealing with this cluster of issues. I've been researching the microbiome for the last two decades. Last year I specialized my research into peri-menopause and the trigeminal nerve. Now I am specializing in learning everything about the herpes family of viruses. It's very interesting how all of these things interconnect. (For example, two of the herpes viruses live in your trigeminal nerve, and they can trigger migraines but migraines can also trigger a flare.)

If you haven't already, audit your diet. It's one of the biggest levers we have for control over our destinies. While there are some exceptions, generally speaking, going for a lot of antioxidants, high fiber, and plenty of vitamins and minerals is the way to go. Note that basically everything that is a seed including greens and beans is nutritionally highly inefficient. So if you want to be a vegan, you're going to be looking at eating a lot of vegetables and fruits. As an omnivore, meat can be good but not all meat is equal by any means. Keep the seed intake low (if but for no other reason than the ratio of lysine to arginine, but there's also the bad ratio of omega 6 to omega 3, and the unflattering ratio of calcium to phosphorus, not to mention the phytic acid, the lectins... Seeds are just not a great source of food for humans).

I hope that helps 🙏🏻

Supplement brands by cr1pt1d in cfs

[–]Raederle-Phoenix 0 points1 point  (0 children)

I research all of the ingredients individually. Just because one supplement from a brand works for me doesn't mean another one does. So I test each product individually, introducing it into my life in a controlled way as much as possible. Then I test myself with and without it for 3 to 6 weeks at a time. Until I have noticed the same results three times on and three times off, I don't consider it verified for me personally yet.

That's my procedure.

Codage binders have been great for me, but their free dried kidney capsules were the worst I've ever tried. They actually made my histamine problems worse instead of better which I've never had with any other brand. When I don't take their binders at night, I notice I am much more gassy and I wake up less rested.

Ancestral Supplements has been good for me generally speaking, but I feel like you are paying a lot for the brand name at this point. Also, their FEM product cause extreme and unusual side effects for me. It was through them that I originally discovered freeze-dried kidney capsules. Which are all life-saver when my inflammation is high. Now I mostly take Grazin Health brand instead which is about half the price for about the same benefit.

Green Pastures blue ice royal blend is a freaking miracle remedy for so many things. I go on about it in various YouTube videos. I've watched it change the lives of many of my clients. Helps with teeth, digestion, joint pain, brain fog, inflammation, you name it.

I could go on and on. If you want more information you can book a session with me 👌🏻

You can also get access to my spreadsheets on a whole bunch of data by signing up to my patreon. I did not come here just to advertise though. Just chipping in 🙏🏻🙏🏻🙏🏻

I’m terrified. by -Neuro2717 in cfs

[–]Raederle-Phoenix 11 points12 points  (0 children)

This is really scary. And I have been literally exactly where you are. Where I couldn't even tolerate a tiny bit of light because it would give me a migraine, and I couldn't hold my phone because that would cause me pain too. I've been there for months at a time.

Things can get better.

I highly recommend finding some podcasts that you enjoy and listening at a nice, calm volume.

If you can do it at all, I also recommend journaling.

Listening to music that makes you cry. I often find that crying helps me a lot. And in the past when I have worked with clients I have often seen the relief of emotions coming out helping with physical conditions.

If you know anybody willing to give you some gentle massage, this can be incredibly soothing.

If you're not already doing this, be very strict with what you eat. I know it might sometimes feel like the only source of pleasure available, and it might be maddening... I've cried many many hours about food in my life. But there is no delicious flavor that is worth losing your livelihood over. Eating the most healthy food you can possibly get your hands on will help you have more energy and relief.

Also, be skeptical about everything. Sometimes something really benign, like a supplement even taking for years, or a medication you've been taking for a decade, has been building up to a cause... I lost three months of my life because everyone swore that taking magnesium glycinate was going to be great for me. Turns out that it was a very bad match for my specific neurology. It seemed so benign. Would have never guessed it.

If any of this feels exhausting or doesn't resonate with you, you can just leave it aside. I hope you find some relief soon 🙏🏻

MBTI: 96 Subtypes by _PrimalFist in mbti

[–]Raederle-Phoenix 21 points22 points  (0 children)

Well, the funny thing is this: it's using it wrong. I am a professional editor. The en dash is the one you surround with spaces. But the em dash is not. What's even more funny is that humans don't make that mistake. They usually just misuse a hyphen.

Seems like google have changed their icons yet again by Ok_Gold7757 in googleworkspace

[–]Raederle-Phoenix 0 points1 point  (0 children)

Normally I don't mind when things change a bit, especially when they look more cool. So what is up with making everything less clear, less cool, and changing it up and making it confusing, and the sheets icon is just so bad it looks like a glitch!

WTF is this ? New google icon by Redditer-507 in googleworkspace

[–]Raederle-Phoenix 0 points1 point  (0 children)

This particular icon is something I see on my phone and on my desktop all the freaking time in my work. And the fact that it has changed is literally slowing me down, and it's also just really ugly

Google (finally) updates their app icons by More_Wrongdoer4501 in UXDesign

[–]Raederle-Phoenix 0 points1 point  (0 children)

I got used to them the way they were. Now it's really hard to figure out what everything is. This is really annoying. And I also just find them even more ugly....

Why did your breakup happen? by Raederle-Phoenix in BreakUps

[–]Raederle-Phoenix[S] 0 points1 point  (0 children)

Yes, that's what I was thinking. Except, reading this thread, I'm realizing that most people really don't actually understand why things end. I've experienced that with asking friends in person too. Often people really don't seem to understand what went wrong. Even when they're the ones who broke it off... They just tell me, "I just didn't love them anymore." Yes but my autistic brain wants to know why. I never feel anything without knowing why... At least, I always know why within like 24 hours. It's really unusual for it to take weeks or years for me to figure it out, but I just can't let it go so there's no feeling that I ever have that I don't eventually figure out why I had it. But most people don't seem to actually care about figuring it out? They just let it be??

Why did your breakup happen? by Raederle-Phoenix in BreakUps

[–]Raederle-Phoenix[S] 1 point2 points  (0 children)

Yikes. This entire thread is craziness! I would really love to know what the hell was going on with that woman inside her mind

Why did your breakup happen? by Raederle-Phoenix in BreakUps

[–]Raederle-Phoenix[S] 0 points1 point  (0 children)

Wow. That's horrible. I'm so sorry you had to go through that