Nele

I tweet about the things I don't like: severe chronic illness / ableism / toxic positivity / medical gaslighting / dysautonomia / MEcfs / autoimmunity

[Nele @NeleHelena]

I wish there was more written on very severe #POTS #dysautonomia. It's always "take your fluids + beta-blockers and you'll be fine". Once in a while I read that people need a wheelchair. But it can be way worse. It's never mentioned that some people can't sit or are bedbound 🔋⬇️

[Nele @NeleHelena]

@c3vvno 2015!

[Kirsty Schnickelfritz @KSchnickelfritz]

Fessing up now, this was me. 😬

[Nele @NeleHelena]

@BayouMystere Ha I already have them on block. But yeah also too many mutuals here :(

[Nele @NeleHelena]

@KSchnickelfritz @ChronicLiving1 Haha I've read yours and I took it as an example when I was answering my questions 😅

[Nele @NeleHelena]

Hey it's me, Lena. I was one of the patients who did an interview about hope for @ChronicLiving1

As you might know I'm kinda the hope grinch, but I've tried to make it not that bad 😅

https://t.co/NbSIitx4xr

[Sarah Barker @SarahBarx035]

Lena – on how hope changes https://t.co/hHKMee79Rs via @ChronicLiving1

[Nele @NeleHelena]

@einfachkaffee @Ramyisback What's a Ren? 🤔

[Nele @NeleHelena]

@Gavtaraysin Yeah before i found the community i really thought that i must be doing this wrong. Especially because doctors are adored. And then you suddenly find all these people with similar experiences and realize this is a systemic issue.

[Nele @NeleHelena]

@_netflixandill I'm sorry a kidney infection caused so many issues for you too

[Nele @NeleHelena]

@Gavtaraysin Thank you, I thought it could be relatable for many people, we all go through similar things

[Nele @NeleHelena]

@SarahBarx035 Omg so many 😮

I always have the same few. The ones on my screenshot were just one busy morning

[Nele @NeleHelena]

New step in the morning routine: leaving my phone next to the window so l can see which birds I hear.

App = Merlin Bird ID

[Nele @NeleHelena]

@wobbliestbear Ooh that one sounds nice too!

[Nele @NeleHelena]

@cfs_jo Ooh i didn't know the lightning maps!

[Nele @NeleHelena]

@SarahBarx035 @ChronicLiving1 @lammas_leaves I'm so glad you found that doctor. It means so much when someone just acknowledges reality. Like this should be the standard and not something rare.

[Nele @NeleHelena]

@NobleRingleader Thank you 💙

[Nele @NeleHelena]

@Heena77142958 Yeah and it isn't even enough to have done one, you have to do them all 😅

[Nele @NeleHelena]

The mind body people believe their approach is always succesful and when it isn't it must be because:

- you lack motivation
- you didn't do their own special program

They just can't imagine that people genuinely tried it and that it just didn't work.

My experience... 1/

[Nele @NeleHelena]

@SarahBarx035 @ChronicLiving1 It's @lammas_leaves who chose the picture!

But yeah such a coincidence!

[Nele @NeleHelena]

@lammas_leaves @ChronicLiving1 💙

[Nele @NeleHelena]

@ChronicLiving1 @lammas_leaves Thank you for this initiative and getting other patients involved. It's so necessary and I hope many therapists and other healthcare professionals will find and read the many interviews you did and other information on the site ♡♡♡

[Ramy2.0 @Ramyisback]

Lena – on how hope changes https://t.co/1jQtkzAbs0 via @ChronicLiving1

Amazing interview by Nele, strongly recommend people to read it @NeleHelena