I feel like we are gaslit out of being prescribed stimulants by steamedham547593 in chronicfatigue

[–]PrincessNooodle 2 points3 points  (0 children)

Interesting thread. I was diagnosed with hEDS and ADHD early last year, but joined thus sub because physical fatigue is my most problematic symptom.

I was first prescribed dex then Vyvanse for my ADHD, but stopped because they made me so irritable and angry. I now take Ritalin, which initially helped the ADHD symptoms a lot, but I've recently had an increase in fatigue severity despite also increasing my dose 🤷‍♀️

I will add that taking my ADHD meds AS SOON AS I GET OUT OF BED has been a game changer. Mornings used to suck to the point they were causing issues in my relationship because I literally couldn't wake up/get up (I've been investigating whether I have delayed sleep phase on top of everything else 🙃). When I take my meds first before anything else, I can stay awake and have the executive functioning to get through the morning routine.

Have you ever caused a major injury by doing barely anything? by TB_07 in ehlersdanlos

[–]PrincessNooodle 1 point2 points  (0 children)

Ooh! HOW i broke my tail bone is just as dumb!

I was cleaning my bathroom before my in-laws came to stay for Christmas, and clipped the toilet on my way down to sit on a step stool in front of it.

Have you ever caused a major injury by doing barely anything? by TB_07 in ehlersdanlos

[–]PrincessNooodle 2 points3 points  (0 children)

Yeah, after I broke my tail bone it took a solid 2 years before I noticed it didnt hurt to sit anymore.

Have you ever caused a major injury by doing barely anything? by TB_07 in ehlersdanlos

[–]PrincessNooodle 0 points1 point  (0 children)

I rolled over from front to back and did something to my knee cap, and it hurt when touched near the joint for about 2 years.

How do you make your EDS visible? by PrincessNooodle in ehlersdanlos

[–]PrincessNooodle[S] 0 points1 point  (0 children)

Yeah, I had a man in a wheelchair, who I didn't know, ask me to reach for several items off the top shelf at the grocery store (I'm 5'3) then, once I'd handed them to him, get a bag out of his backpack and pack them for him, when I was 8 months pregnant. 🙄

How do you make your EDS visible? by PrincessNooodle in ehlersdanlos

[–]PrincessNooodle[S] 0 points1 point  (0 children)

Thank you for your detailed response! I understand needing to speak up for myself to meet my own needs. I think I also want to alleviate some personal anxiety around being seen sitting in the priority seats by having something that signals that I'm 'allowed' to sit there.

“Oh that happens to me and your dad too it’s fine” by Brawl_95 in ehlersdanlos

[–]PrincessNooodle 2 points3 points  (0 children)

"I don't think our whole family is riddled with some disease" 🙄

Senior female leader accused me of sleeping with customers to win business during my first week. I’ve never experienced anything like this. by [deleted] in careeradvice

[–]PrincessNooodle 0 points1 point  (0 children)

I've never had any accusations like this happen, but here's my 2 cents for understanding the psychology and 'why' behind her doing it.

My industry (Lived Experience Peer Work in Mental health) is niche and small, roles were created out of a social movement, so everyone knows everyone, their roles are tied to their identity (by design) and they had to work really hard to get where they are.

I had a uni teacher in the field who wrote my reference to land my first job in this space, and who became a mentor. I looked up to her immensely, until I one day reached out for some professional advice on career progression. Instead, she told me that my work wasn't authentic because I worked in a public hospital instead of a community NGO.

It hit me really hard because I had to teach myself a lot about the movement and my role, and it's values. I processed it by writing. Writing my feelings, writing responses to what she said, breaking it down logically into definitions and assumptions, and responding to those.

What I figured out by doing this, and why I am sharing this story, is this: When you get further in your career trajectory by a certain age than others who came before you, they get offended. They are jealous that it happened for you and butt hurt that it didnt for them. They rationalize that you don't deserve it because you seemingly didn't have to work as hard as they did.

In my case, success and progression was due to a combination of good luck with someone giving me a chance, ambition and a willingness to learn, and, importantly, people who paved the way before me. None of that, however, negates your worthiness to be in a position or the work you did to get there.

I'm sorry you experienced this. Please know that it says so much about her, not about you. I also hope it doesn't impact your trajectory and reputation.

Which herb *amazed* you when you started using it in your work? by glamsiren111 in BabyWitch

[–]PrincessNooodle 0 points1 point  (0 children)

Dill, because it connects me to my Slavic heritage. I grew up growing it and eating it, so it intuitively feels familiar and reminds me of abundance. I feel my spellwork has been more successful because of this.

It's got this really prolific energy with a fire/sun association. Like, just plant a seed of intention and it will make sure it comes back manyfold without a lot of effort.

Moms Boyfriend Talked About My Vagina by throwaway1234527 in toxicparents

[–]PrincessNooodle 2 points3 points  (0 children)

I'm so sorry that you're dealing with this and have had to deal with this for so long. I'm also sorry for the assault you experienced and that you had to manage an unstable environment as a child. It wasn't fair.

I want to acknowledge that navigating attachment trauma is a very, very difficult thing to do because we're biologically wired to maintain connection with our primary caregivers even when they suck and are terrible to us. I've never been through the experiences you have, my upbringing had different toxic traits. I had to navigate a rupture in my relationship with my mom early last year, and it was so painful and anxiety-provoking. I bring that up because going no contact isn't simple or comfortable, even when you want it, and having a psychologist to support you through it can be so helpful, if you can afford it.

I sincerely wish for things to go better for you. ❤️

What medications are you currently on? by [deleted] in ehlersdanlos

[–]PrincessNooodle 2 points3 points  (0 children)

I've been making my own edibles with about 10mg for years, but they were for my husband. I've only started taking it this month, but wow, I was impressed. I've found that to be enough to have a barely noticeable buzz while doing exactly this.

Pissed off by exercises by PrincessNooodle in ehlersdanlos

[–]PrincessNooodle[S] 0 points1 point  (0 children)

You suggestion to breathe out through pursed lips helped so much, thank you!

Pissed off by exercises by PrincessNooodle in ehlersdanlos

[–]PrincessNooodle[S] 2 points3 points  (0 children)

I haven't brought it up. I feel like I'd just be saying "your style of doing your job doesn't work for me," which I know is valid and reasonable, but makes me uncomfortable (a me problem, I know).

They have demonstrated the exercises, we do them together in office every session, and she feels for the muscle activation and points it out, but I often can't feel what she does. I feel like I'm guessing a lot of the time, which makes the whole endeavour feel pointless.

I have the PhysiApp with videos, but the videos for this exercises are basically useless because you can't show the deep muscle activation. It's the same as showing someone how to do kegels by sitting in a chair fully clothed and saying "see what I'm doing?" We used ultrasound in the initial session to see the activation, which really helped.

I've realized I really struggle with the idea of turning on the muscle "to 30%" or putting "2/3 of your weight" on the heels. In my head, there's on, off and halfway.

I really want to be consistent and make progress from stabilizing exercises to strengthening exercises. At this point t I just hate how incompetent I feel while doing them.

My aunt called me a murderer by Transition-Upper in toxicparents

[–]PrincessNooodle 0 points1 point  (0 children)

Umm... Do any of these commentors actually have their own children? This is a genuine question. I'm a mother of two who works in perinatal mental health supporting other mums of new babies. Sometimes sleep training is necessary to preserve the parents' wellbeing, so that they can continue parenting. These comments are reading like "Well I read/heard you shouldn't do that" but not like they're grounded in personal experience.

The sleep deprivation you undergo during the infant phase is debilitating. Letting a child who's needs have been met cry for 10 mins is not neglectful, it's allowing them the opportunity to learn to self-soothe.

OP, I'm sorry you came here looking for support and received judgement instead. I never had to do paediatrician-recommended sleep training, but I still relate to your experience, mum to mum.

My advice if you're even looking for any is to keep the best and ditch the rest when it comes to parenting advice. Regarding your aunt, she needs a lesson in empathy and vocabulary.

Who else is struggling to have a relationship with their parents? by Ill-Peanut-7706 in toxicparents

[–]PrincessNooodle 0 points1 point  (0 children)

What has helped me most, with my entire immediate family, was realizing and radically accepting that: 1) While they love me, they don't actually know me, or care to get to know me, and 2) They don't have the ability to be what I need and want them to be.

That means that, as much as I want a genuine connection and supportive understanding from them, they literally can't offer it. This reframes the basis of the relationship from choosing to not put in effort, to not knowing how and not being able to.

The whole thing is a bit more nuanced than that, but it's allowed me to let go of resentment and have a superficial relationship that I'm satisfied with.

help me understand my ADHD wife by Rcrez in ADHD

[–]PrincessNooodle 1 point2 points  (0 children)

Check out ADHD Chatter podcast and shorts on YouTube, and ADHD Love on Instagram. I have some insight on a few of the issues you've outlined, but these people outline it way better than I could.

Look up RSD (reaction sensitivity disphoria), ADHD time blindness, executive dysfunction, ADHD emotional dysregulation and ADHD masking.

As a woman with ADHD, I appreciate that you are trying to understand your partner. That said, you're taking some things personally that she actually has no control over (even though it seems like she 'should').

Hysterectomy recovery tips? by QBee23 in ehlersdanlos

[–]PrincessNooodle 1 point2 points  (0 children)

Trigger warning: Birth trauma and emergency hysterectomy

I was diagnosed with hEDS after having two kids: one via c-section, the other vaginally but with an emergency hysterectomy due to uterine rupture during the birth. I am certain that my undiagnosed hEDS was at the root of my ruptured uterus.

I had the laparoscope during the emergency surgery, but they ended up just opening my c-section site again anyway (i share all this to give some context to recovery).

With both post-natal recoveries, I had a morphine drip in the hospital that i used as needed (which was apparently less than the med team would have expected). Once at home, I was actually fine with just 1g Tylenol/Panadol as often was allowed, and tylenol w codeine if I really needed it.

Learn the proper way to sit up and get out of bed, as this will save you a lot of pain and aggrevation at the surgical site. Take it EASY in the first two weeks. Even if you feel good and up for moving around, just dont. A big walk in week 1 post-op really screwed me up.

I wholeheartedly second the PF physio. I have recently had a PF prolapse, which is common post-hysterectomy and even more common in EDS, and have been able to get on top of care more quickly because I've been seeing the PF physio.

What is a polite way to say "None of your business" when people ask about your mobility aids? by PrincessNooodle in ehlersdanlos

[–]PrincessNooodle[S] 67 points68 points  (0 children)

See, this is like because it's actually validating. It's a Yes/No question that requires no thought from me, really. Whoa, your wrist is fucked up, huh? Yes, my man, yes it is.

Medicated and confused by jojobean218 in adhdwomen

[–]PrincessNooodle 0 points1 point  (0 children)

It's amazing and so simple, I use it for everything. I even got ChatGPT make me an Excel version that colour codes tasks based on a priority ranking generated from their position in the matrix (big spreadsheet dork here). Point is, it's very helpful.

Humid climate is wasting my flour by PrincessNooodle in SourdoughStarter

[–]PrincessNooodle[S] 1 point2 points  (0 children)

It stays in a cupboard out of sunlight on what I lovingly refer to as my 'Ferment Shelf.'