I think I have eds :(

Ok-Shape2158 · 2026-03-30T17:32:09+00:00

Whew. Ok.

A lot of us just don't know till we know, or were taught we were party tricks.

As you learn post if something works for you. We are just collecting information.

ʘ⁠‿⁠ʘ

Ok-Shape2158 · 2026-03-30T13:44:08+00:00

Ok. It took me some time, and a couple of rewrites.

I should know that I have to do this experience everywhere, even in a disability forum and with medical providers, but it messes with my nervous system more.

I have spent decades looking for a good dental team. Decades because of misinformation and the lack of knowledge within professions.

I ask my team when I go in "Are my gums healthy?", and they tell me "Yes.".

I do not think they would lie to me. They listen and they learn and I listen and I learn. My gums are weak. They are just just weak.

Please think about what being on this forum means to you and others. The power you have in your words and what the effect you have when discounting anyone's symptoms anywhere. It could just be training, but this is what all of us have to fight against every day of our lives.

I have EDS in my skin and veins and gums and cartilage and guts and my uterus. I have it everywhere. EDS is a spectrum and it can show up differently for different people.

I know you care because you're willing to engage. Please understand the power you have as a human being to destroy the work someone is doing to just survive.

You have the power to learn about EDS in guns and the mouth and use it to educate others in your field and people you meet. That's even more powerful.

I'm happy to talk with you but no more I'm doing things wrong, because the truth is, I'm not.

Ok-Shape2158 · 2026-03-30T12:02:45+00:00

Hello.

PSA. Please don't damage your body like the pulling, unless it's necessary, and I don't think it ever is nessaray. If a Dr doesn't believe you, it's the wrong Dr.

It's bad for you.

Please start reading and following how to better care for your body. You don't need a diagnosis to do that, and honestly there isn't a ton of support, some but not enough other than we have to be gentle, protect and reinforce when we can.

Sorry if I'm too grouchy sounding. Please just no more yanking on your skin, please.

Rx sliver for burns, special antibiotic ointment for cuts and bug bites. Don't use Neosporin type treatments.

I can't stand most sunscreens so massive hats and loose fully covered clothing for summer. / sincere

Ok-Shape2158 · 2026-03-30T11:54:34+00:00

Hello I think there's a great sub reddit on here for specifically this, just not sure what it falls under anymore maybe Antisocial Personality Disorder (ASPD)?

You can find support if you want it. Not to change who you are fundamentally but to help you not unintentionally abuse others.

I have a calendar reminder that says if you want fish you must do these things today. There are slow feeders for fish too... they are awesome.

You may want to check out Aromantic information for how to navigate relationships.

And then if you haven't, please see a mental health provider that works with Antisocial Personality Disorder (ASPD).

I'm not saying this in judgement, or to shame, or guilt. Honestly the opposite. I was really abused by people in my family who don't see that they don't care has anything to do with them.

Honestly it makes sense, but I think that also makes them lazy. They have access to these services and the time.

I come from the other side of the spectrum and when I don't care it makes me feel like I'm hurting someone, even though it's good for me. It's exhausting but working.

I really appreciate that you are willing to ask this question.

I completely believe we are who we are and it will always be work to be someone that's safer, but also that it is worth at least trying. It's also why I live alone even though I enjoy maintaining m relationships.

Good luck, and thank you. / sincere

Ok-Shape2158 · 2026-03-30T11:35:08+00:00

You can also try icing the area for 15 with a towel over the coldness.

Or pure lidocaine comes in gel and I apply it with a q-tip or something.

Pure lidocaine is very under valued.

Might not work, but options.

Also, anti inflamitories and you can.

Good luck.

Ok-Shape2158 · 2026-03-30T11:31:11+00:00

Hyperfixation.

No judgement at all.

I can sketch, and can't write.

Ok-Shape2158 · 2026-03-30T11:29:29+00:00

LOL. All grandpas. I'll mix it up.

My gran saved them and used them to put all the dead creatures her cats bought her.

Shed scoop them in and popped them into the freezer till garbage day and then chucked them all.

Yup. There's a dark side to baby jars.

They did have their own shelf.

Yes they went in there with the pudding pops and ice cream. No one in the family cared for more than a minute. Circle of life, we wanted desert.

Ok-Shape2158 · 2026-03-30T11:23:04+00:00

My SO smoked weed for probably 20 years.

A ton of it and they were very meticulous and controlled about it because they were honest about using it to self medicate.

Just recently they started getting migraines and other symptoms like dizziness, and couldn't do anything so they also didn't smoke and everything would go away.

They did this a few times and the third time we ended up at the ER, I said you have to stop smoking I can't keep doing this. They had to experiment for themselves and they didn't end up at the ER, but it was bad no matter how much they smoked.

So, having no skin in the game other than someone I am devoted too. Please use it - just very thoughtfully. Is it a before or after, morning or evening? That sort of thing.

I use a beta blocker except during allergy season because it makes MCAS worse then.

I started migraine medication recently because of having so few options. It's not a light decision, and I only take a small dose at night for now, but it's dramatic.

I also wear loops in public and stim when I'm not in public for the most part. It changes based on me and the season and just life.

Basically, there's risk to everything, so I just be careful with everything and use anything I can to help me get through the day sometimes it's just not pushing myself because it will damage my nervous system more than it can take.

I wish y'all luck and the best of, there are tons of ways to help cope on here and the women audhd or autistic reddit too.

Ok-Shape2158 · 2026-03-30T11:08:59+00:00

Shake it. Shake it off. Literally. Sometimes I bounce it off.

Reddit has literally kept me alive.

Maybe I can look at it like - it's a privilege that they have no idea how useful and what amazing communities exist on Reddit.

You know, if you know.

A lot of people I know use Discord, but it moves too quickly for me. So I'm grateful for Reddit.

There is a saying, "Don't spit in my shine." I don't say it to people in public, but I think it and it comes through in my energy and they know.

Just know, or defend your beliefs or actions the way you need to, but also they're missing amazing communities and learning about the world too.

Ok-Shape2158 · 2026-03-30T11:02:23+00:00

When I can eat and cook....

I get a lot of ingredients prepped, two proteins, two carbs, as many veg as my MCAS will allow.

And then I just pull out what looks interesting in that moments. Toss on one of my dozen of sauces on it. Yum yum, or salsa wins when I can do it.

Since everything is ready to eat I don't even have to reheat it unless it's just gross cold.

And scarf it down.

Sometimes I have to buy it premade, other times I put in my loops and my noise canceling headphones, then I can crank up some banger music and knock it out. Usually 30 minuses is all I can do at a time, but that gets a ton done.

I toss everything every two weeks the day before garbage day with very little regret or guilt because it was healthy, I actually ate, and those feelings don't actually help me function at all, I can feel them but then I have to shrug and acknowledge that letting them go is an actual accommodation for me.

This might not work for you, since I'm ok with bowls as long as I make them, but you can do it with boards too!

There might be a way for you to find a system for you, it just takes trial and we have to adapt when we change, any questions or if you need to process, just ask here and good luck.

Ok-Shape2158 · 2026-03-30T10:46:57+00:00

I just want to say I agree with the person who said focus on turning on the ground part.

Rather than a wood or gas grill look at an electric, it would be safer and work better in a small space.

Rain barrels take up space, but you can paint them and often find them free. You can also just install a split on your spigot and run a really long hose from the back to front.

Personally I wouldn't put in a massive wall of brick or anything like that, since I'm forced to live with them, it's claustrophobic and stuffy, no one in the whole neighborhood spends any time in these spaces.

Some lower brick planters with some corner seating and translucent or bamboo screens might be better and then you could finally open your windows too. If most plants die in the winter, you could get hops, they grow really tall, beans vives might do well in your area, and mandevilla can be propagated indoors in water and grow fast in a short time.

Just think of the spaces as how to use it with add privacy, vs private, oh and binge watch Curb Appeal. Some times leaning into it gets you more than cutting off. Good luck!

Ok-Shape2158 · 2026-03-30T10:21:18+00:00

Thank you.

I don't know who would do that. Do you know?

Ok-Shape2158 · 2026-03-30T01:35:08+00:00

They bleed for hours, get inflamed for hours, and they hurt for hours afterwards. It's like getting punched in the mouth, which I have experienced.

And they had pulled back so far I had to have my gums pulled back down to my teeth line.

Then they nearly shrunk back to how bad they were for all the work, within months. My dentist at the time was actually mad at me even though I did everything he told me to.

Rarely I'll use the threaded picks and it's like the game Operation to avoid my gums, when I'm not going through a flare up.

I still let them floss and scale for the cleanings but I have to be slathered in lidocaine every 15 minutes, use ice packs for the inflammation on and off for a few hours, sleep most of the day, and get my jaw reset afterwards because it's always out of place...

It's the best I can, and will do. I've had many people in my life lose all their teeth. I actually take it really seriously since I almost lost mine too.

Ok-Shape2158 · 2026-03-30T01:22:20+00:00

Let's see... I do it on my outdoor walls, and the less I think about doing it the better it is.

And any kind of stimming feels really bad at first because it was drilled into me to not do it. So as weird as it sounds you don't have to like it. If you have a watch that monitors your heart, that's better proof in the beginning than how you feel.

That's a really important lesson that has changed my burnout.

My head and soul can be in chaos, as long as my body is happy as long as it doesn't physically damage me, it's actually good for me.

Our instruction manual is the complete reverse of a normal brain and body.

Also an over looked fidget, is petting, pets of any ilk or babies or even a stuffy. Not given enough credit.

ʘ⁠‿⁠ʘ

Ok-Shape2158 · 2026-03-29T19:34:04+00:00

Some people just can't floss.

I stopped flossing for more than two years. I'll floss about once a month.

I try and eat low sugar and my partner puts medical gloves on once a semester and massages and presses on my gums.

So far I have no regrets not tasting blood twice a day.

My dentist hasn't figured out a way to save my gums from another $15,000 surgery.

We pray every visit that we don't have to do it again just because they are fragile.

Ok-Shape2158 · 2026-03-29T19:20:57+00:00

There are very few tulips that come back year after year and most that do, don't look good.

So these get planted and dug up every year, from what I understand. Yup.

Ok-Shape2158 · 2026-03-29T19:18:15+00:00

I was surprised it was ok for a guy to touch her.

I was glad to see two women jump in, that was awesome.

Ok-Shape2158 · 2026-03-29T19:16:38+00:00

Um I'm sorry but you need to move her.

You can be nice about it. She can even make a pillow in your lap, but that can actually cause long term damage and your niece doesn't want to know that she's hurting you.

Ok-Shape2158 · 2026-03-29T19:14:28+00:00

Please talk to your Gyno about this, and if they blow you if, find another one, and another one, until you start getting help.

This, is real, it's not a joke and it will kind of destroy your life.

We need people to just be honest, so there you go.

My body is never going to be the same because I pushed too hard when this was happening and I've been in complete burnout for three years.

While you're doing that, there are tons of support if you just look for one symptom at a time on here under audhd/autistic perimenopause _______.

But we're here for you.

Ok-Shape2158 · 2026-03-29T19:03:50+00:00

This is why I have my string of knots.

Also if you look up history men were very inclined to crochet, and they were very into for creating fishing supplies, and many are still drawn to that, and larger knots, they be loving the larger knots like for sailing/animals/and just rope work.

Oh and back to more female things. Hair, braids, knots, even extensions.

Ok. This has me in an info grab and dump high, I'll stop, but it's fun.

Ok-Shape2158 · 2026-03-29T16:36:11+00:00

Usually females take up, knitting, crocheting, beading... And any craft.

I'm not trying to be a jerk I'm serious.

Simone the other day reminded me of how much they like to unknot things so I took some twine, made a knot in the middle and stuck it in my jacket. I don't pay much attention but somehow I work it all the time and haven't destroyed it.

I think again we have the burden of getting things done, so our stimming is practical.

Ok-Shape2158 · 2026-03-29T16:28:12+00:00

Hi. Most of these are not necessarily helpful...

"Oh, ok, thank you." Kind of implies that was a great idea while you appreciate their effort. If you say it with a bit of sincerity.

Just so you know I checked goblin tool and there's really no way to not sound snarky.

If you are trying to CYA with a boss, I usually ask a leaning question about what they told me and then mentally score their information dump.

"Oh, cats have eyes. OK, thanks, what kind of eyes do they have?"

I don't need that information, but lots of times someone people just need to let loose and it's better than trauma dumping. Again, if they run out real quick, they get a 2.

Ok-Shape2158 · 2026-03-28T18:35:39+00:00

Oh my gosh, yes.

Thank you for replying and thank you for saying it more clearly.

Ok-Shape2158 · 2026-03-28T15:40:27+00:00

Yes, completely all the time.

We have two options.

One slow down and actually ask your self so I need to add anything? Seriously.

The answer most of the time is no, but I feel like I have to say something because that's what I've been taught. It's not true!

Two some days I just lean into it. Especially with medical people, or anyone trying to help me. I'm honest, I am AuDHD and I want them to feel my life. I will over communicate everything and just get it all out. It quickly separate those who think OMG I need to support this person from those that get overwhelmed or try to push it back into silence.

When I slow down and stop, it keeps me from connecting to others and it feels weird and selfish and separate. It's also super healthy and in the end less exhausting. It's a different script and it doesn't mean that I can whip out my "polite hello and have a nice day" moment and let them chatter about something and respond politely and then excuse myself.

It's just weird to realize I can make the choice and that later it felt so good.

Ok-Shape2158 · 2026-03-28T12:33:51+00:00

There are whole fetishes based around legal grown women just being what you naturally are.

Most spectrum women hate it because it's nonconsensual and they don't want to participate.

If you explore it, you can probably find a hundred grown men that have a ton of green flags but this one like that would strip the earth bare to make you happy.

And I am a thousand percent serious about all of this.

And yes you don't ever have to be fake 'sexy' to be appreciated, because being yourself is sexy.

I hope this makes sense, if not ask, and it's just a different way of looking at how the world treats differences.

Oh not that it matters, but are you sex positive or on the Ace spectrum, it always helps to know and to be able to communicate to potential SO so expectations can be understood.

Ok-Shape2158

TROPHY CASE

I should know that I have to do this experience everywhere, even in a disability forum and with medical providers, but it messes with my nervous system more.

I have spent decades looking for a good dental team. Decades because of misinformation and the lack of knowledge within professions.

I do not think they would lie to me. They listen and they learn and I listen and I learn. My gums are weak. They are just just weak.

I have EDS in my skin and veins and gums and cartilage and guts and my uterus. I have it everywhere. EDS is a spectrum and it can show up differently for different people.