Follow

Hey, when you please keep in mind that, at the moment, it's the only way that a lot of us disabled/chronically ill folks get to discuss our illnesses.
Lots of us use the groups feature on fb to help each other find doctors, discuss symptom treatments, and get support around our illnesses.
So please remember not to shame people who can't or don't delete their account. It's not our fault that it's shitty and it's not our fault that we still need it.

@ThisQueerBashesBack Yeah, for me reddit serves this purpose, and it's why I defend it these days. For all its faults, there happens to be a really well-moderated and supportive #ADHD subreddit full of discussions on responsible medication use, dealing with side effects, what strategies, apps, etc. work help you remember stuff and get through your day, dealing with care in different countries, dealing with reactions from friends and relatives, how to find good providers, etc.

@ThisQueerBashesBack yes! My wife has an extreme condition that means she pretty much can’t leave the house if she wants to keep breathing. Facebook is a godsend for her - allows her to socialise with others near and far without the hazards of chemicals and other stuff that could kill her.

@donkey Chemical sensitivity, or mast cell activation disorder? I ask cause I have MCAS myself and before my current meds I relied on a face mask a lot when going places.

@ThisQueerBashesBack Oh wow - yes, she has MCAD *and* chemical sensitivity. She also now has steroid-induced Type 2 diabetes. She’s on immuno-suppressants and a bunch of different types of antihistamine. She uses a face mask if she does have to go out somewhere. It’s all very new - and not entirely well-known about - in NZ at least.

@donkey Oh wow that's so rough! My dad has Type 2 diabetes and he said the hardest thing to get used to was having to change his breakfasts. He used to eat oatmeal (supposed to be heart-healthy and all that) but it spikes his blood sugar really bad.
A note on face masks: If you (or someone you know) can sew, you can actually replace the filters on the Cambridge/Vogmask style ones! The filters by themselves are like $5 for a multipack!

@ThisQueerBashesBack yes - that sounds similar to what happens with my wife with breakfast. She’s managed to swap things around & stabilise her blood sugar really well - feels much better as a result.

Didn’t know you could replace filters - that’s very handy to know! Unfortunately we don’t have that skill ourselves & those we know that do would contaminate the masks with the fragrances they use. We’re just going to have to learn aren’t we! 😉

@donkey
As far as sewing goes, it's a pretty simple project.
You just unpick one side, pull out the old filter, put in the new one, sew it back up!

And that's good to hear that you're getting the food stuff figured out. I've had to do a lot of that myself and it's the one change that's been the most difficult to adjust to.

@ThisQueerBashesBack Agreed. Deleting Facebook isn't a singular action. It's an ongoing communal effort. As the Tories would say, let's starve the beast.

@ThisQueerBashesBack
FB Groups are about the only thing keeping my account there open - I have some niche interests (not sexual or political) which aren't well served yet in the #fediverse (in fact, my alt-accounts often seem to be the only ones posting using related hashtags), so I keep my sanity by using the groups over there.
Apart from that, I've been using it less and less ever since discovering this place the best part of a year ago

@ThisQueerBashesBack I agree. I also was in some support groups, before I deleted Facebook. But I'm registered on some forums now. It seems to be the only alternative to Facebook groups...

@toromino I'm looking for forums to switch over to. Would you recommend any of the ones you've found?

@ThisQueerBashesBack Depends on what type of forums you are looking for... I registered on some german forums focussing on anxiety and mental issues.

@toromino Gotcha. I'm looking for some general chronic illness/disability forums, and hopefully some parenting from a distance forums. Though I only speak/read English, unfortunately.

@ThisQueerBashesBack Totally valid, and I hope that a new solution emerges for you and others like you. I have a partner who is chronically ill, so I understand the struggle.

Sign in to participate in the conversation
Anarchism Space

A mastodon instance for anarchists and libertarian socialists.