r/SevereME

What’s your dream home setting as severe?
…If you could just snap your fingers and be there - kind of like magic 🪄 ✨

Don’t let reality and money hold you back!

A few examples..

- Cozy studio in Tokyo where you can lay in bed and watch the city and neon lights? Order food and cute stuff and get it delivered in no time! 🌃🍣🛍️

- An old house on the coast where you get to drink tea in bed watching the ocean and experience all four seasons? 🌊⚓️

- A small cabin in the woods? Remote, cozy, fireplace and books. 🌲🪵🔥

- Or a house in suburbia with carers, chefs, cleaners and so much staff that absolutely all your needs are met so you can use your precious few spoons on your kid(s)? 🏠👶🏻👧🏼

Edited the intro- you don’t have to do the shopping or renovations 💙

The three to five years mark has been around for the last 20 years.

Some biomarkers sound promising and have been repeatedly abandoned

I understand the subgrouping comes first.

I mean, people are killed by psychiatry, it's kind of urgent

- have very limited hand/arm stamina

- currently picking my face and vaping (audhd)

- have some fidgets but they aren't helping (not satisfying, tiring)

-Any ideas, whats worked for you?

I've been eating less and less because digestion itself is extremely hard for my body.

I'm already on a somewhat liquid diet, low histamine and all that

Every time I eat something I get incredibly painful one sided tinitus "shocks" that go through my neck into my chest, along the vagus nerve I think (usually my warning sign for massively overdoing it).

How do I stop crashing from digestion? Is it time for a feeding tube? :(

very severe, looking for things to do that don’t require a device especially. but I may want to watch some not too simulating Halloween-ish movies/shows because it’s my fave holiday.

Anyone has tried it while severe/very severe?

It's always the same: I have a specialist appointment. They suggests something. I get hopeful. Then I look into whatever it is and realize it has more potential harm than good to do.

Anyway, I take it ("what if this is what moves the needle?). Umpleasant side effects.

I tried ivabradine and ended up badly. I'm scared of trying fludrocortisone, I can't physically afford a trip to the ER.

One year ago I've experienced a thunderclap headache, which brought me from moderate to very severe in 60 seconds. It cause me to have extreme POTS, whereas I didn't before. I've had a brain - not spine - mra /mri and there was not fluid found, but still they found "broadened Vilchow Robin spaces in the basic ganglions". This finding was not there 4 months earlier in an mri I did.

I have different kind of tinnitus but not the "blocked ear" or underwater ones, not severe headaches, no pressure on the skull base.. But I still wonder if I have a cfs leak and if it plays a part in my severity.

I'm laying flat 24/7 so I can't compare laying and sitting up. Sure, sitting up makes me extreme dizzy, but that could be also from the flat laying or pots.

Doctors don't know sh*t and I can't move anyway.