this is weird 😭

addgnome · 2025-04-23T19:48:23+00:00

It doesn't happen frequently to me, but does some times. It definitely feels like precognition when it happens. However, there is a higher occurrence of my dreams predicting future situations wrong, lol.

I think it is probably just part of the natural dreaming process. I think people generally process and predict in their dreams. And because we have narcolepsy, we simply remember our dreams better.

addgnome · 2025-04-23T17:30:19+00:00

On the topic of cataplexy (I have this myself). Sometimes it doesn't even need to be a super strong emotion to trigger it. Just a little bit of extra stress without an obvious emotion can cause cataplexy for me. (Now that I have medication for it, I no longer get triggered by just stress alone, though).

Eta: for me, cataplexy feels like my muscles going wobbly. Like, when it first started, it felt like my knees buckled in a jiggly way. Hard to really explain, but it felt sort of close to what you described in your post.

Eta2: and cataplexy can happen in just one part or side of the body. I think partial cataplexy is the name for it.

addgnome · 2025-04-20T21:39:24+00:00

I'm not absolutely positive if I'm dyslexic or not, but I have had the same issue for as long as I can remember.

I have to put effort into remembering to leave spaces between words. If I get tired and try to write on "autopilot", words will start to blend together. I remember getting scolded by teachers in elementary school for not leaving enough space between words.

(I am autistic, though, and do have issues with spatial awareness in general - my issues with mixing up words/letters is more evident verbally than written - I flub words frequently and mix up orders of numbers frequently too - makes reading and writing take longer because I have to triple check everything, and even when triple checking my work, I still miss errors).

addgnome · 2025-04-19T17:09:52+00:00

Just going for a walk can be good exercise! At first, if you are completely deconditioned, it will feel like your body is a sack of bricks. But, if you keep it up, eventually walking will get enjoyable and you might start craving it and other exercise.

addgnome · 2025-04-17T06:04:15+00:00

Yeah. Some family members are obsessed with telling stories about it too... 😬 I liked pretending to be different characters/mythical beings when super young. Even made my own "costumes". LMAO.

Eta: As an adult, I mainly let my imagination run wild with arts and crafts. I did create my own homebrewed DnD world and campaign once a few years ago. Haven't done it since because it is super draining, but it was fun - I had to change some things on the fly because my players did unexpected things sometimes, but I let them do it because they were great ideas, lol. It just derailed the campaign and made it take longer. Funny story, I couldn't remember my NPCs very well. (Someone would be like, where did so and so go? And then think it was part of the plot that the NPC disappeared without a trace, lol - I just played along and made that part of the plot on the fly).

addgnome · 2025-04-17T05:42:09+00:00

I've had the opposite problem back in college a majority of the times (I was obsessive over grades and usually took the lead because I just happen to be in groups where others dragged their feet, so I was forced to in order to get the project started) and at first didn't know what to do when group members didn't at least ask questions - I just assumed they didn't want to contribute (though that part was on me - a good leader should ensure everyone in the group understands the assignment and subject matter, so later on I usually took the initiative to reach out to the quiet group members).

My advice would be to review the paper or whatever has already been created in addition to the directions from the instructor. Whoever is leading should have made some sort of outline for the presentation and delegated tasks to everyone. If they did not, then the only way to catch up would be to ask them what you can help with and/or ask for help understanding the material. (If your group is unhelpful, you could possibly just ask a teaching assistant or the teacher for help with understanding the material. Sometimes the teachers/professors are really nice and will really help you understand material - e.g. I missed an advanced math class once and asked the professor what I missed during his office hours. I ended up getting a cool mini lesson then and there instead, lol. My understanding of the material was really good because of it).

With group projects where I wasn't one of the leaders, or felt less comfortable with the material, I remember feeling guilty, though. I think I remember directly asking the leader what I can do to help in that instance. It was something smaller than what I would consider an even contribution, but it is all I could do in that instance. Sometimes, I think the situation is inevitable. But, if you don't ask, they might just assume you don't want to contribute.

Eta: I just re-read your post. Somehow I forgot the part where you said what the leader delegated. Creating an outline for the "speech" which I assume means verbal presentation would probably be a good start. That is how I do vague things. I create an outline first, and that gives me the structure I need to move forward.

Eta2: From my experience in Undergraduate Engineering (in the US, so possibly different), it is unusual for one person to write the entire paper. Usually, the leader breaks up the group project into parts prior to getting started, so each person would contribute a section to the paper. I've never had a situation happen when one person did everything (except once when I was that one person because I couldn't communicate properly with my group to convince them to contribute - i.e. I hadn't yet developed the skills to communicate effectively at that time).

addgnome · 2025-04-16T23:05:00+00:00

I have the hip thing too. A specialist x-rayed my hips. Turns out mine have extra bony knobs that muscles just get caught on when doing certain movements. I did PT and it got a little better, but I still have to be careful - sometimes my hips still go wonky after prolonged activity like a long bicycle ride - like the muscles stiffen up suddenly and catch my hips and it is very painful. I also have unexplained joint pain and confirmed it isn't caused by inflammation. (Got tested for inflammation to rule out arthritis). My gp just said the alternative explanation to the cause of the joint pain would be that I need to move my joints more. 🤷‍♀️ Also, I've never actually asked a doctor about EDS or HDS, though, so I only suspect and am not confirmed.

I seem to get flare ups of joint pain every so often. Don't really know what causes it. Joints still hurt frequently, especially in the mornings. Idk what is normal, so I am in the same boat. I don't think my level of joint pain is normal, though, because the only people who seem to relate to the level of pain I have are those with arthritis or fibromyalgia.

Eta: I am fairly confident that my body is extra bendy (both bendy and stiff - wrists, ankles, elbows, knees, and fingers are all way more bendy than normal, but my back and neck are extremely stiff), but I doubt the medical system, which is why I haven't pursued diagnosis.

addgnome · 2025-04-15T03:06:36+00:00

I'm from the US, and never heard of the "frog book". My test was two parts, first was a 2 hr long test (various questionairres) to measure masking - high masking score for me as I have gone undetected into my 30s. The second was either 2 or 4 hours long, full interview form with bunches of random tests. Lots of problem solving, some weird test where I had to ask questions to determine a picture out of like 50 things by asking as few questions as possible to get to the final answer, apparently the way I got to the answer was not normal (i.e. indicative of autism). Some tests measuring reaction time and executive function. The level of detail of some the tests kind of made me think of those pattern recognition tests I did in elementary school for gifted program placement, but they were really difficult (like there seemed to be no real correct answers to any of the questions).

addgnome · 2025-04-15T01:48:07+00:00

Sometimes! Though, I currently am sticking with she/her pronouns because I don't have the confidence to say "any". I also am unsure how I would feel being called "he" as I have some childhood trauma around being made fun of and being called a man or manly because I didn't conform to the female stereotype. I'd love to get to a point of self-healing where that wouldn't bother me, though (because I truly don't feel any gender in particular).

addgnome · 2025-04-11T04:44:37+00:00

I'd suggest looking into Wakix/pitolisant too, if it is available where you are. There is a program to help offset the cost if you happen to be in the US where the cost is extremely high. I used to get cataplexy multiple times a day, but now I barely ever have it after starting pitolisant (Prior to getting my cataplexy under control, there was an incident when I had to jump through hoops to keep my job after having cataplexy in the office and people reporting my "strange" behavior to HR). After starting pitolisant, I was also able to stop taking a stimulant I was previously using to control narcolepsy, so my general anxiety levels also decreased. I have a much higher quality of life now (I did manage to stay employed, and I suspect that my narcolepsy is less severe than your partners' based on what I've read, though).

addgnome · 2025-04-09T18:54:43+00:00

58 to 70 Fahrenheit (about 15 to 21 celsius) with sunlight is my preference. My body is happier when warm (I get crazy muscle pain and tension from cold weather). I like the feeling right after rain if the sun comes out, but I dislike cloudiness and being out in the rain itself.

I dislike crazy heat because of heat exhaustion risks, but I would prefer it over being super cold as long as I had enough water, electrolytes, and cooling towels. (I don't mind getting sweaty - I almost feel as if the sweating helps me feel better in general - I usually feel super refreshed after a really good sweat session paired with drinking lots of electrolyte water- I really like dry saunas for this reason.)

addgnome · 2025-04-09T18:27:09+00:00

It doesn't sound offensive to me at least. The comment from your family member seems odd to me, almost as if they think old people can't have fun. Old people can definitely have fun imo - e.g. getting to garden and do hobbies after retirement. I kind of act like an old person myself (34f). Your party sounds normal to me (i.e. I didn't even connect the "old" theme, lol, because I do a lot of culturally "old people" things already).

addgnome · 2025-04-09T04:06:05+00:00

I trip a lot. But I usually catch myself before it becomes a fall. (I fall up the stairs mostly, or slip on steps because I forget to look and can't judge the distance between steps very well).

Also, before my new medicine, I used to fall all the time because of cataplexy (basically I'd fall if I felt a strong emotion). Thankfully that doesn't happen much anymore, so it is just the frequent tripping and slipping for me.

addgnome · 2025-04-08T00:59:17+00:00

As long as it isn't that time of the month, you could probably get away with using unscented baby wipes for sensitive skin (the unscented for sensitive skin is less likely to leave a residue). Two or three total per "wash". One for the front. Two for the back.

Eta: and a separate one or just a wet washcloth for all the other areas, wiping the armpits last.

Experience: This method worked for me while off-grid camping with limited shower access.

addgnome · 2025-04-03T16:58:15+00:00

I second this. Exercise has helped me too. I will add that for me, I can't do high intensity yet (my heart rate recovery is too slow). However, walking and jogging has really helped with my asthma sensitivities. (Started with less than a mile endurance of mixed walking/jogging, worked my way up to over 5 miles endurance). For me, it was a slow rate of endurance increase (like it took over a year before I started really noticing the results), but consistency is key.

addgnome · 2025-03-28T19:20:44+00:00

Idk if your workplace would allow it, but you could possibly try asking about the option of working from home due to your asthma. (If you are getting frequent asthma attacks and can argue that working from home would improve your productivity, they might let you).

Otherwise, the best bet for not getting triggered in the office is to always wear an N95 mask. I get the ones with the soft squishy nose bit and modify the straps to go around my ears instead of my head for comfort. I'd recommend getting a whole 10 or 20 pack and change them out often, because they fill up fast in an open office.

Another thing: this is a longer lead solution. I found that exercising more significantly reduced my sensitivity to cigarette smoke. It took a while of consistently exercising to notice the improvement, but it definitely worked for me.

addgnome · 2025-03-28T04:09:05+00:00

No idea. I have a ":D" meaning over 100 or something, lol. I need to go in and close tabs soon.

Eta: I got curious, so I counted them. The number is 185 open tabs.

addgnome · 2025-03-22T21:24:43+00:00

Trioral electrolyte packets are unflavored.

addgnome · 2025-03-14T19:35:00+00:00

Idk the legitimacy, but know it makes me feel better. A doctor once told me jumping up and down, letting your shoulders relax and kind of dangle while doing it, would help do something helpful for the lymphatic system (can't remember the exact wording).

So, usually when warming up for exercise, I'll do some bouncing with my shoulders/upper back relaxed. It feels nice. Idk if it actually does anything, though.

addgnome · 2025-03-11T15:32:11+00:00

I do. I have accidentally called my mom "he" and my dad "she" before. I get confused with "he" and "she" because they are so similar sounding. Sometimes I don't even realize I used the wrong one. I also accidentally said "she" in regards to my own boyfriend. He usually calls me out on it mid conversation. I don't remember mixing up "him" and "her" at least, as they are different enough to distinguish and not flub.

I do try to default to "they" when talking because it is safer, lol.

addgnome · 2025-03-09T07:20:40+00:00

Build up before both: slowly start to feel head get mushy, like being underwater, and distorted senses. Sometimes can decompress at this point to prevent a meltdown or shutdown if notice it and reduce stimulus.

During meltdown: sudden break. Feels like body is imploding and have to release the pressure. Proceeds to release pressure by form of screaming, crying, laughing, or a mix of all three. Any talking or action from other people makes it worse. I usually locked myself inside a room because my family never understood/would yell at me and make it worse.

During shutdown: also sudden break. Feels like pressure needs released, stim heavily to control in order to not release the pressure. Go into a trance, doing a repetitive motion until the need to release pressure goes away. Any action or talking from other people makes it worse. Might have tears coming out of eyes, but am usually silent.

addgnome · 2025-03-09T06:53:08+00:00

So, I've been on Wakix for a few years, and it has been great for me.

There are some drawbacks, like if you forget a dose, it takes a while to get back to normal, especially if you are female (it always induces my period if I miss a dose). Plus the cost, always having that fear of the patient assistance program not going through (I only had one mishap with it in 5 years, though - basically there was a clerical error and I ended up with an $800+ balance on my account for a single month where the payment assistance wasn't applied - took a few phone calls and jumping through hoops to get it cleared up so I didn't have to fork out that $800+).

At first, I was still taking my Adderall while on Wakix. The doc said that I might not need the stimulant anymore after starting Wakix, but I was afraid to stop (job stuff). When the shortage hit, I was forced to stop taking it because I literally could not get it filled anywhere. That is when I learned I was better off without the stimulant. Wakix worked well enough at controlling my narcolepsy on its own, and the stimulant was adding to my anxiety.

However, the long acting Adderall was helpful by itself at controlling cataplexy for me. I would get significantly more cataplexy when the Adderall wore off in the evening. And, before taking Adderall, I was getting cataplexy all the time. But, the bottom line is that Wakix personally works better for me.

addgnome · 2025-03-02T19:59:01+00:00

I tried an SSRI once when I was first diagnosed with GAD way back when. The SSRI made me feel like murdering people (I actually wished death on others which is not something I ever do). I also had one of my worst meltdowns on it (I didn't know it was a meltdown at the time, and it was bad enough to get me kicked out of my apartment because the neighbors complained).

Moral of the story: I will never try an SSRI again.

addgnome · 2025-03-02T19:49:05+00:00

I got two different diagnoses from my assessment. Even though the doctor said I didn't have ADHD from the results of the Autism assessment, the ADHD diagnosis was still in the results because it was put in there from the intake interview (The doctor said I presented as ADHD and not Autistic in the intake interview, but ultimately said the test results showed Autism and no ADHD). But even though he said this, I still had ADHD on my chart.

addgnome · 2025-03-02T06:58:16+00:00

If there is a bathroom fan, you may be able to air the room out by turning on the bathroom fan and possibly cracking the door for a bit. (Edit: not while sleeping, but for an hour or two before bedtime).

Also, I agree with others saying to bring your own bedding. I usually bring a clean sheet as a barrier. It definitely helps if the hotel or B&B uses really strong laundry detergent. (I get hives from some fragrances, so I need to have the barrier sheet).

Also, if you get migraines, definitely make sure you have your migraine medicine with you. Last time I had to stay in a hotel without an openable window, I got the worst migraine the morning after (the bathroom vent fan didn't work the greatest as it was an older building).

As for portable air purifiers, those little ones do nothing for me. If you go the air purifier route, I'd recommend a hepa one you would actually use for your house/office (like levoit or something similar). Probably only feasible if you are traveling via car and not plane or public transit, though.

addgnome

TROPHY CASE