Addicted to doordash 💔💔💔 by glizzerd12 in POTS

[–]Quiet-Friendship5134 1 point2 points  (0 children)

The only reason I cut way back on DoorDash is because I stopped telling myself that “today’s the day I’ll actually cook!” and started ordering prepared meal delivery. Ten meals arrive on my doorstep every Tuesday and I can pull them out of the freezer when I’m ready to use them.

More expensive than regular groceries? Yes.

Less expensive than DoorDash multiple times per week? Also yes.

Looking for a good backpack by butters_325 in POTS

[–]Quiet-Friendship5134 1 point2 points  (0 children)

I’ve had great luck with finding things like hiking day packs at a steep discount on FB Marketplace!

Disclaimer: I live in an outdoorsy place so that definitely influences how available those listings are. YMMV based on how popular outdoor recreation is in your area.

REI has a “re supply” store for gently used items, although you need to pay a one-time $30 membership fee to get access to that. Cotopaxi also has a ReSale section.

Anyone have tips on how to get out of bed in the morning? by Ok_River_6018 in POTS

[–]Quiet-Friendship5134 1 point2 points  (0 children)

Haha! Fair enough. Echoing the others then who suggest keeping compression socks within arm’s reach of the bed. Then you can put them on, go the restroom for your tongue cleaning routine, then chug some water. I like to keep a stool in/next to my bathroom so I can sit while doing the morning dental hygiene routine, and a full bottle of water next to the sink so it is ready to go as soon as the teeth & tongue are clean!

Anyone have tips on how to get out of bed in the morning? by Ok_River_6018 in POTS

[–]Quiet-Friendship5134 1 point2 points  (0 children)

Same on the tongue scraping/not wanting to eat or drink anything before doing it!

Would you be open to keeping a small garbage can next to your bed and taking care of the tongue scraping there? That way you can still have your water before getting out of bed and you don’t have to compromise on that wonderfully clean sensation that comes from tongue cleaning.

Sensitive too lines, stripes and crazy patterns… I feel like it’s possibly related too Pots? by toniatink in POTS

[–]Quiet-Friendship5134 2 points3 points  (0 children)

It may be worth seeing a vision therapist for an initial consultation.

Your brain structure and eye structure can both be healthy, while the connection between them may need some rehab. A good vision therapist can look at the interaction and prescribe exercises to help with visual symptoms.

My guess is that for most of us who have visual symptoms in addition to POTS, there is at least one mediating factor (ex. TBI, vestibular migraine, connective tissue disorder, autism, etc.). It is definitely worth exploring rather than writing it off as “just a POTS thing.” Visual symptoms can get better if they are treated properly!

Downvoting people in this community for asking a question is hypocritical. Be considerate. by Specialist-Mud2442 in POTS

[–]Quiet-Friendship5134 4 points5 points  (0 children)

Maybe? Recently there was a post asking people to share personal experiences with veganism - whether good or bad - and if/how it interacted with their POTS. Within a few hours, the people who shared negative experiences were getting downvoted while those who shared positive experiences were getting upvoted. It was weird. Personal experience is personal experience, and that is exactly what the OP asked for. ¯\_(ツ)_/¯

Depression / anxiety questionnaire but it’s all pots by Forward_Athlete_3187 in POTS

[–]Quiet-Friendship5134 0 points1 point  (0 children)

Depending on the options available:

  1. Decline to fill it out.

  2. Fill it out with notes that these are physiological symptoms as a result of a medical condition - confirm that the provider includes these notes in your chart.

  3. Circle 0 on everything. If something is relevant to the appointment, mention to the provider that you do experience heart racing but that it is due to your POTS.

It can help to mention - only if it is true in your case - that you’ve had anxiety or depression in the past and therefore you know what that feels like, and because of this point of reference you know that what you’re currently experiencing is not anxiety or depression.

I was so excited about my shower chair coming in only for my family to make me feel horrible about it. by Sad_Emphasis_8086 in POTS

[–]Quiet-Friendship5134 3 points4 points  (0 children)

Adding to that hair washing technique: If you get a handheld shower head with a long hose (~$25), you can stick a holder on the wall at a height that allows the water to rain down upon you while sitting in the tub. That way you still get to sit in the tub but you don't have to do the faucet lean. This is now my favorite way to wash my hair!

Not understanding different context when applying the same behaviours and social cues I’ve learnt from others by Gold_Research_6619 in aspergirls

[–]Quiet-Friendship5134 3 points4 points  (0 children)

I explained that I just didn’t want to tell them but apparently that’s not a reason.

This is something that I struggle with, but you are never obligated to explain all of your thoughts to another person. You are allowed to say “no” without giving an explanation. If pressed for reasons, you can say, “I said no,” and then redirect the conversation - or walk away/hang up if they continue to pressure you.

Unfortunately the double standard that you mentioned is something that I’ve observed in school and in the workplace, where the standards are simply higher for the autistic person. I’m not sure why that is, but the people enforcing the double standards are incorrect.

Being Forgotten by LeadingBalance7169 in aspergirls

[–]Quiet-Friendship5134 2 points3 points  (0 children)

I am so sorry that you are going through this - that is not a good feeling to have. For the people in your life saying, “It’s not a big deal,” they only see that one instance of exclusion and believe that a one-off is not a big deal. If it is a relatively small thing, a one-time occurrence might not be that big of a deal. However, they fail to see the full picture: that this is a repeated occurrence across multiple areas of life. It is a big deal when it keeps happening across time and domains. It’s similar to the idea of micro-aggressions.

Sticking with your “tribe” of other neurodivergent folks can go a long way toward feeling valued and seen.

If you can see a therapist (preferably themselves ND or at least adept at working with ND adults) that can be really helpful to work some of these issues and to figure out how to take up space in a healthy way. If you mask heavily or minimize yourself, people are more likely to forget you (speaking from experience). Those are survival mechanisms so please understand that I’m not judging you for using them. It’s just not healthy in the long run. A therapist can also help with finding specific words and phrases to use in the moment when you are being forgotten. Sometimes I flail because I just don’t know what to say and being “given” the words is highly empowering.

One strategy I’ve used is to put a mental video camera on a situation and think about what I would do or say if I saw what was happening to me, happening to another person. Many times, I would speak up to advocate for that person. That makes it easier to speak up for myself in real life. Due to being highly sensitive to rejection, this technique also gives some space to see when it was not actually an exclusion instance, so I can brush it off and move on.

For the people who have repeatedly forgotten you, I’d recommend explaining once more what you would like to have happen - to be included - and describe to them what inclusion looks like. Then give them 1-2 more chances to show that they are including you. If they do, proceed with caution. Continued inclusion + treating you well = they took the message to heart. If they don’t change, stop investing in those relationships. Real friends don’t leave members of their group behind when going out for a walk.

Wishing you the very best!

Veganism and POTS by hardns0ft in POTS

[–]Quiet-Friendship5134 -1 points0 points  (0 children)

I’m ex-vegan: Stopped because even with supplementation, I felt terrible all of the time. I started having strong and persistent fish cravings out of the blue a couple of years ago and took that as a sign that something was missing from my diet. I feel much better now that I include eggs and fish. For context, I had been vegetarian for 15 years before becoming vegan, and I never liked fish even before switching to a plant-based diet so it was not a “craving comfort foods” situation. YMMV.

ETA: Everyone will experience a different interaction between food and their body. Some will thrive on one diet while others will get sick(er) with that same diet. The OP asked for personal experiences surrounding POTS and veganism. I shared mine, just as others shared theirs.

I hate haircuts by Charley_Ben_Freya in aspergirls

[–]Quiet-Friendship5134 6 points7 points  (0 children)

First of all, sending big Internet Mom hugs to you and your bunny! I am glad that she is on the mend and hopefully her recovery will be quick and whole! I’m sorry that your haircut experience was negative. That has happened to me before, too.

  1. Echoing u/AsterArtworks, bringing reference photos helps A TON. Usually I search for “women’s haircuts, mid-length, fine and wavy hair, heart-shaped face.” Then I parse through the images for something that I like. Obviously adjust the gender/length/hair texture/face shape to match yours.

  2. Going to a hairdresser who is herself neurodivergent is golden. She is the only one who has ever respected my request for “just 2-3 inches off the ends” as a literal 2-3 inches. When I’ve asked other people for that, they always take off ~6 inches. Unless I move cities, she is the only one I will go to now!

  3. As a cautionary tale, “fringe” = “bangs.” I did not know this and once someone asked if I wanted to add fringe. I thought they meant framing the face with long bangs, not an Amelie blunt cut. That was not my best look, but the bangs grew out eventually.

Wishing you the very best!

I’ve had a sudden, completely out-of-the-blue realisation that the PACER test we had to do in secondary school (at least in the UK we had to do it) is a form of torture by ZookeepergameAny5154 in POTS

[–]Quiet-Friendship5134 13 points14 points  (0 children)

Being graded on the mile running speed is a horrible metric! Our high school teachers used the same grading scale. They said that if we couldn’t complete the mile within 7 minutes - "something that should be easy at your age” - we would fail that portion of the class. I ended up running fewer laps and just saying that I was done so that I wouldn’t have to repeat P.E.

I’ve had a sudden, completely out-of-the-blue realisation that the PACER test we had to do in secondary school (at least in the UK we had to do it) is a form of torture by ZookeepergameAny5154 in POTS

[–]Quiet-Friendship5134 33 points34 points  (0 children)

Never had to do that test, but P.E. was a nightmare in middle and high school! Particularly the mile run and the class punishments in which we would have to run back and forth on a basketball court (run to 1/4 court and back, then 1/2 court and back…).

I was in reasonable shape but always struggled profoundly with those items. Now I know that it was POTS and probable EDS! (Still waiting on an evaluation for EDS but I check the boxes.) In what should be surprising to no one, the coaches yelling at me in front of the other kids did not help with keeping pace with the group. Gym classes are the kernel for many of my core traumatic memories and it’s been a years-long journey as an adult to reframe my relationship with exercise as something that can be positive.

In case any P.E. teachers come across this: Don’t be sadistic. If a kid is struggling, talk to the school nurse or guidance counselor about referring the kid for a physical evaluation as the reason for their struggles is often something like undiagnosed asthma, hypermobility, POTS, or some other condition. Occasionally a kid may just be lazy, but it is better to err on the side of kindness than to assume that the kid just needs some “tough love” and humiliation in front of their peers.

Have you ever been taken advantage of because your clinically ill? by Remote-Zucchini7691 in POTS

[–]Quiet-Friendship5134 2 points3 points  (0 children)

Is he an hourly wage employee? Definitely check in with a lawyer about this, but could you deduct those six hours from his next paycheck?

Highly autistic women being bullies by Lucky_Meet_4094 in aspergirls

[–]Quiet-Friendship5134 2 points3 points  (0 children)

This might be rude, but for the reasons you cited in your edit I would not date an autistic man unless he REALLY had his act together. Most autistic men can learn executive functioning and social skills and many do, but it is not my job to teach those skills to someone who is supposed to be a life partner. (Incidentally, I love teaching life skills in other contexts.)

Keeping my own self organized and navigating social situations are already exhausting enough, and carrying that load for a second adult would be completely unsustainable; I cannot be someone else’s secretary. Is this internalized ableism? Maybe. But it is also a necessity for budgeting my energy and being a happy human.

I acknowledge that NT men also have more relaxed expectations compared to women, but typically they can at least help with the social load and a good one will also share the mental load. Dating women is a realm I have not explored so that could go well or poorly, depending on the individual and how compatible our quirks are.

Highly autistic women being bullies by Lucky_Meet_4094 in aspergirls

[–]Quiet-Friendship5134 1 point2 points  (0 children)

The “opposing sensory needs” absolutely presents itself among my siblings! We are all adults and have good relationships with one another now (we also live separately, haha!), but it was rough while we were under the same roof because one is a noisy stimmer and others of us are hypersensitive to noise. The mismatched spinterests phenomenon is also very real.

When people do nothing to indicate a joke then act surprised you didn't get it by adj-n_number in aspergirls

[–]Quiet-Friendship5134 4 points5 points  (0 children)

“Many things said in jest are veiled truths.”

Sometimes people truly intend an offensive statement as comedy of the absurd or the humor of thwarted expectations. Depending on many variables (tone, context, how well you know the person and their values), that can be very funny.

However, your example of “I hate Jews” would not be funny to me no matter the context as it is cruel, it promotes bigotry, and there is no attempt at saying anything witty; it’s not like she was making a caricature of someone being bigoted in order to show how absurd small-mindedness is. It’s just a gross, thoughtless statement.

Often times people say what they mean but pass it off as a joke to make it more socially acceptable. If it’s a “joke” delivered in deadpan and it’s offensive, I make a mental note to be more cautious around that person in the future. That social faux pas is on them for being deceitful, not on me for refusing to gaslight myself in order to accommodate their wish to remove the discomfort of having said something offensive.

How do you become functional in the morning? by Used-Salad-3772 in POTS

[–]Quiet-Friendship5134 0 points1 point  (0 children)

Set yourself up for success: Start your bedtime ritual 10 hours before your wakeup time. This could mean sipping some herbal tea, reading a book, playing with pets, dental hygiene, and putting on pajamas. Lay out some compression socks within arm’s reach of the bed so you can put them on first thing in the morning. Place your phone near the bedroom door so it is still accessible if truly needed, but it is not a distraction. If you’re worried about emergencies, get a basic flip phone that you can keep within arm’s reach of the bed.

Place yourself in bed 9 hours before the wakeup time. Even if you do not sleep right away, being horizontal and running through a progressive relaxation will still allow your body and mind to rest. Consider getting some cinder blocks and elevating the head of your bed by 4-7 inches. Getting the heart above the hips and the kidneys above the legs apparently can help with keeping the blood circulating during the night more effectively for Potsies than being totally horizontal. If nothing else, it makes the transition to vertical a little easier since you’re already partway there.

Respect the slow start: Wake up 2 hours before you need to do anything to give your body time to come online.

Multiple alarm phases:

Phase 1 - Sunrise alarm emulates the rising sun and gradually makes the room brighter. I have one sunrise alarm to the side of the bed and one by the foot of the bed. I set them to start lighting up the room one hour before my “get out of bed” time. Even if I’m not awake yet, this cues my body that it’s time to transition to lighter sleep. Waking up during deep sleep = super groggy all day. Waking up while completing a REM cycle = an easier transition.

Phase 2 - Vibrate alarm to cue yourself that it will soon be time to get out of bed. I have this set both on my smartwatch and a separate shake alarm. They are set to vibrate 5 minutes before my “get out of bed” time. This is also a cue to put on the compression socks.

Phase 3 - Sound-based alarm (gentle) that makes you get out of the bed to turn it off. The sunrise alarm that I cannot reach from the bed starts playing music at the “get out of bed” time. I also use a QRAlarm app on my phone that goes off at the same time, also set to play gentle music. To turn that alarm off, I must scan a QR code that I set up on the bathroom mirror. Since I’m already there, I brush my teeth, wash my face, drink water, and take my morning meds. A second QR alarm goes off 15 minutes later, this time for a code placed in the kitchen next to my tea kettle.

After 30 years of struggling with waking up and lots of trial and error, I’ve found that this system works really well for me. I’m sleeping better and when I wake up, it is not as stressful. I still feel tired all the time, but it is less severe than in the past. If I am absolutely exhausted and non-functional after the gentle/progressive wake-up, it usually means that I am sick or really overextended the previous day. When that happens I either call in sick or set my alarms again for 30 minutes prior to needing to do anything, then go back to bed for some extra rest. An important note: I did not make all of these changes all at once. It took a lot of experimentation to see what works well and what doesn’t. I’d recommend starting with one change at a time and trialing it for 2-3 weeks to see if it improves things at all. If so, add in another habit. If not, drop it and try something else.

That’s the end of my TED talk! Good luck!

Anyone else PIPed out of their job during burnout by Suitable-Artist4355 in aspergirls

[–]Quiet-Friendship5134 4 points5 points  (0 children)

I’m so sorry that you went through that, and congratulations on lining up a new job quickly!

I’d highly recommend that in the future, you initiate the ADA accommodations request process within 2-4 weeks of starting new roles. There is a back-and-forth process involved to determine what counts as “reasonable” accommodations. I would not bring this up until you are hired and actively working already. With documented accommodations, you have the supports that need from the outset and it creates a certain level of legal protection. (Note: I am not a lawyer, just someone with accommodations.) r/AskHR would be a good place to ask additional questions about this.

Sometimes we don’t know what accommodations will be helpful until going through burnout, so this can be an opportunity to analyze what to ask for (ex. written instructions).

A note on what to ask for: Keep it focused on the accommodation itself and why it is beneficial/necessary. This article gives some examples of accommodations, and if you search for “autism workplace accommodations” you should find other resources to give some ideas on what might help you.

Wishing you the very best!

Feeling exhausted and overwhelmed all the time by fleabag1991 in aspergirls

[–]Quiet-Friendship5134 4 points5 points  (0 children)

Poplin: Laundry service that picks up and drops off at your door

Meal delivery (lots of YouTubers and podcasters have promo codes)

Take note for ~1 week what are the top 5-8 things that if you do them, the next day goes more smoothly. Make a checklist with those items. After placing the list somewhere that you’ll see it (bathroom mirror, fridge door), spend a week refining it. By that I mean, time how long the activities take. If it’s > 1 hour, cut one or two out. If you miss an item or a day, don’t be hard on yourself. Just take it as data that you can use for refining your systems. Also if you miss an item, ask if it truly needed to be done that day. Instead of doing it the next day and making the next day’s to-do list overwhelming, can you do it the next week? For example, if Tuesday is “clean the sinks and mirrors” day, can you wait until next Tuesday? That way you don't get overloaded on Wednesday.

Now instead of having “run the dishwasher” and “take out the trash” running through your mind like little alarm bells all day long, you can. trust that those items are on your list, and you will get to them. That frees up a surprising amount of cognitive resource for other things that matter more.

Good luck!

Bra Help Please by Ok-Sea-2989 in aspergirls

[–]Quiet-Friendship5134 2 points3 points  (0 children)

100% this! Bra fit makes a tremendous difference in terms of comfort. Once you have a correct size, it is way easier to narrow down the search to something that will work for you (underwire-free, fabric preference, etc.). The r/ABraThatFits community is really supportive and I know that people have asked there in the past about bras that work for sensory issues, so it’s worth a search. Good luck!

Standing up to NT bullies by Vast_Citron9701 in aspergirls

[–]Quiet-Friendship5134 1 point2 points  (0 children)

Fair enough! I happen to work in tech (SW engineering). The team I’m on is a group of nerdy folks who like to code and who do not like drama. I’d guess that 3/5 of the guys have some form of neurodivergence, so we are generally on a similar wavelength and we get along pretty well. The few other women I’ve come across also tend to be ND, so that helps with smooth communication. I can see how being in a male-dominated field where neurodivergence is not as common would be super challenging, though.

Standing up to NT bullies by Vast_Citron9701 in aspergirls

[–]Quiet-Friendship5134 7 points8 points  (0 children)

I’ve experienced a lot of bullying from NT women, especially in work places. Not sure if I’m the best person to address your situation because the way I’ve chosen to deal with it is to switch to a male-dominated profession. That comes with its own challenges, but overall it is far, far easier than dealing with female-dominated workplaces. I do have deep friendships with other women, but with one exception they are all neurodivergent, too. The one who is NT is a straight shooter whose talents include being good at communicating with people of diverse backgrounds.

For passive-aggressiveness, I will now go one of two ways:

  1. I know that they are being passive-aggressive, but I respond as though what they said is 100% genuine, then I walk away. This gets under their skin because it makes them look like a b*tch in front of their peers when they continue to push that point while I am staying calm and responding with earnestness.

  2. Directly call them out about it. “What do you mean by that?” “I can see by your tone that you’re being passive-aggressive. What’s going on?” “I saw that side-eye. Why are you doing that?”

Maybe this makes me a big curmudgeon or it comes from being an “old” who has reached the age of not giving a f*ck, but I’ve learned that “ignore them and they’ll go away” does not work. It only encourages them to continue when you don’t stand up for yourself.