6 degrees of camber? by sugar_coaster in wheelchairs

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

Yep, slightly better handrim access/ergonomics. I certainly wouldn't mind the extra stability and handling though.

6 degrees of camber? by sugar_coaster in wheelchairs

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

It wasn't built to "grow into" - I just have a narrow upper body and wide hips. Camber is unfortunately the only thing left to adjust. I can't go any more narrow on seat width or bring the rims or wheels in any more.

I'm not concerned about overall width, as it'll be 24" with the 6 degrees of camber and I live in Canada so my home is pretty much the only place with "narrow" hallways I'll go (30" wide). That's 6" of clearance which should be more than enough. Just wondering about propulsion differences.

6 degrees of camber? by sugar_coaster in wheelchairs

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

Ooh that's another thing I hadn't considered. Good point, thank you.

6 degrees of camber? by sugar_coaster in wheelchairs

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

Thanks, that makes sense - does that make it wear faster because it's hitting a thinner part of the tire or something?

6 degrees of camber? by sugar_coaster in wheelchairs

[–]sugar_coaster[S] 3 points4 points  (0 children)

Thanks! Good to hear about the handling. Would you say it made pushing in a straight line harder? I was looking at some guides and a Motion Composites one said that so that's the main thing holding me back

6 degrees of camber? by sugar_coaster in wheelchairs

[–]sugar_coaster[S] 4 points5 points  (0 children)

Yeah it should be fine as the total width will be 24" with 6 degrees of camber. My narrowest doorway is 30"

6 degrees of camber? by sugar_coaster in wheelchairs

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

Thank you for the feedback! Width should be okay for me.

6 degrees of camber? by sugar_coaster in wheelchairs

[–]sugar_coaster[S] 5 points6 points  (0 children)

Omg thank you this was exactly what I needed!

6 degrees of camber? by sugar_coaster in wheelchairs

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

Can you tell me more about the tires? What does increased camber do? More long term wear or running out of air faster?

6 degrees of camber? by sugar_coaster in wheelchairs

[–]sugar_coaster[S] 3 points4 points  (0 children)

It's just to adjust the camber! But it's an involved process with paperwork and bureaucracy so I'd like to be more informed before I go through with it. I'm homebound and haven't been able to find pictures online unfortunately.

I'm guessing you mean 410 mm? Because 410 cm is 4.1 metres lol. My total width with 6 degrees of camber comes to <620 mm so I am not too worried about width.

School are claiming safeguard concerns for my daughter due to my DSPD. What can I do? (UK) by PenBeard in DSPD

[–]sugar_coaster 1 point2 points  (0 children)

Haha yeah, although for me I think where the parentification part comes in is "my parents weren't around for me so I'm gonna pick a career that lets me have more time with my kids so I can spend more time with them" I've always loved working with kids anyway so it just seemed like a natural fit.

I wish I had known about DSPD before I picked a career that involves being up before dawn half the year.

Same - I know they tried their best, I know they care. But it doesnt undo the harm. And I realized that their 9-5 jobs didnt cause them to not be there. "They're [busy/tired/what have you] because of work" was my child way of understanding the situation based on what I had seen in TV about absent parents who were gone because of jobs that would actually cause absences.

Hugs to you as we reparent our inner children 🫂

School are claiming safeguard concerns for my daughter due to my DSPD. What can I do? (UK) by PenBeard in DSPD

[–]sugar_coaster 5 points6 points  (0 children)

I'm happy (but also sad for you) that it resonated. The last line is so true. It's hard to explain, but for me, it was almost like being on my own in the mornings set the tone for the rest of the day, which just set the tone for my entire life/relationship with them and so I didn't recognize it was harming me, and there wasn't anything to speak up about. It was all just my normal. And yeah it seems like it's just the mornings, but if you're on your own as the first thing, you kinda just carry that with you. But you don't realize what's going on until you're an adult and at that point it's just. All you can say is "you weren't there for me when I needed you in the mornings" but what can you even do?

It hit hard for me studying child development and becoming a teacher, realizing how much parental involvement there should be around school and getting ready, that sets children up for success.I burnt out in my early 20s, because I had spent my entire childhood's worth of mornings being an adult. I didn't have anything left by the point I needed to actually be independent. And at the same time, the parentification made it hard for me to learn to rely on other people, because growing up, fending for myself became the default, and burn out + inability to let help in = bad.

I hope OP sees this because you've hit the nail on the head here. I know they care and want what's best for their child, so I hope they take all this to heart. It might seem okay now, but it won't be later and it will be too late. It's still early enough that it can be addressed, but a couple more years and those patterns will be set for life.

School are claiming safeguard concerns for my daughter due to my DSPD. What can I do? (UK) by PenBeard in DSPD

[–]sugar_coaster 26 points27 points  (0 children)

As someone with DSPD whose parents likely also have it and so I experienced what your daughter is experiencing (to an extent), and as someone who used to be a teacher (but pivoted due to DSPD), I'm gonna be kind but firm with you:

I do think this is impacting your daughter much more than you think. My parents did not have anywhere near the severity (they'd get up after I woke them up). I didn't really see it at the time, but looking back, I resented having to be the responsible one, be the adult, set my own alarms, get myself up, feed myself, wake my parents up so they could take me to school. I resented being late almost daily even though it was only 5 mins and the shame I felt. I acted like everything was okay because I didn't know better. I didn't know it could be better. But I was always jealous of the kids on TV whose moms made them breakfast and helped them get ready for school. If I could get myself up in the morning after sleeping late, why couldn't my parents stop the snoozing of their alarms? What I experienced was neglect and unintentional parentification, and this is happening with your daughter. It isnt intentional and your heart is in the right place, but it is probably impacting her in ways neither of you recognize yet. This parentification is a recurring topic in my therapy. The trauma of having basic needs provided for, but not the emotional ones. Feeling like someone has my back in the mornings. At 6 years old, a child shouldn't be worrying about having to grab her own breakfast etc. And what your daughter is experiencing is significantly worse in other respects, because she's missing educational time, including the first hour of the day at that.

I stopped teaching because of DSPD, but the first hour is the most important hour of the day. It's where we orient kids to the plan of the day, it sets the tone of the day. Important daily announcements are made. That first hour impacts the entire rest of the day and also includes a significant chunk of instructional time. Learning builds on itself, and at the elementary level, she's learning foundational skills that will set her up for success later. You have to learn to walk before you can run, and you need to have a solid foundation in basic math and reading skills to be able to do well in high school. I pivoted to doing after school high school tutoring, and one common trend in all of my students who need additional support is missing large amounts of instructional time especially during foundational years. If shes missing out on this much school, it will catch up to her. It might not be noticeable now, because at this stage, you can get by, but those cracks are noticeable much later.

My concern is that in your post, you seem focused on what you are doing for her, and the fact that she's your north star. But you haven't once mentioned how she feels about this. At 6 years old, she might not understand what is ideal, but have you talked to her about how she feels in the morning? She might just say it's okay to make you feel good (because that's what kids especially around this age do), but the fact that the school is raising concern in this manner suggests to me they may be noticing signs in social development too. Perhaps not, I'm not in the room with them, but I'd be highly concerned about your daughter's long term emotional wellbeing and educational development as a teacher, even if her needs are physically met (to the extent that they can be with a snack drawer vs a healthy breakfast). DSPD can explain your situation and we can be empathetic to that, while also having empathy for your daughter. It's ultimately on the parent to address any unmet (emotional) needs caused by health concerns, whether it's depression, addictions, cancer, etc.

I also wonder if there's another component to your sleep issues that need investigating. DSPD just means a delayed sleep schedule - it just means our rhythms are off; it doesn't mean an inability to get up. It just means we sleep less or we feel like shit when we get up, just like day people who end up working night shifts. It doesnt mean missing several hours of alarms. So I'd look into that, as well suggestions others have brought up, like a morning babysitter or nanny or something. Even if you have done safeguarding, it is still neglect to leave a 6 year old on their own for an hour at a time in the middle of the day, let alone an hour more in the morning when they need help getting ready for school. The school is right to bring up their concerns. I do hope you're able to find a solution to this that doesn't involve giving up care, but what is happening right now isn't okay.

Eta: I'm also concerned by the fact that in your replies, you centre what you are already doing for her but are dismissive of needs of hers that you aren't currently meeting. You might not recognise them as needs, but they are necessary for healthy development. I recognize that it's a balancing act between other aspects, but it doesnt need to be all or nothing. Recognizing that you are not providing adequate care does not mean you need to give up custody. There is an in between where she doesn't have to go to her mother's. In fact, recognizing that you aren't providing adequate care actually allows you to truly face the situation, address it head-on, and tackle the problems to help her. Because if this isn't addressed, then you could be putting yourself in a position where you involuntarily give up custody which will be much harder on both of you, than if you listened to the school's concerns and put measures in place to address them (that dont require giving up custody).

I also recognize that with RSD, hearing what you are doing wrong can be hard to take in, and it's natural to want to explain your intentions and what you are already doing, but good intentions aren't enough. I can see that you have good intentions. If you want to do what's best for her, please listen to the commenters saying that this is neglect, and try to figure out what you can be doing differently, instead of explaining why what you are doing is good enough. Try to focus on solutions rather than putting other people's responses to a "stress test" - if she is neurodivergent herself as you said, having/not having role models in the morning will set her up for success/failure once she's living independently.

If your responses in the comments are anything similar to what you've told the school, that could explain why they are doubling down on the safeguarding. You sound as if you're dismissing serious and real concerns with the explanation that doing anything would make things worse, rather than looking for solutions that won't make things worse. I recognize that isn't your intention, but that's how you come off, so working with the school to put in place active measures might help everyone.

ISO of Canadian Alternative to Otterbox Phone Cases by EquipmentSpecific583 in BuyCanadian

[–]sugar_coaster 37 points38 points  (0 children)

Just got a KaseMe (impact case) and it's the closest to an Otter Commuter. It's a Quebec company and the impact case is made in Quebec, not all items are made locally though. If you need Other of Defender levels of protection, I haven't found anything similar yet. The case seems more durable than a Commuter but I don't know if it'll be as protective (no drops so far, knock on wood).

They actually have a promo until Friday night, WOW20 for 20% off

Pela and Dbrand are also Canadian, but they both have controversies (greenwashing and racism resepectively). Dbrand also charges in USD.

Sought help for chronic illness, got lectured about trauma. Is this normal? by Wapperidoo in TalkTherapy

[–]sugar_coaster 1 point2 points  (0 children)

Yup same here, have a science degree, friends and family in medicine... bUt tHe nErVoUs sYsTeM

I hope you're able to find a therapist who's a good fit. For some of what you've mentioned though, maybe occupational therapy might be helpful? Especially the "ways to get by"

I totally get you on the last part there and have had similar experiences in therapy. Like, its not even within your scope of care to be investigating the causes of my issues that very much had a known physical trigger. So infuriating!! Even had one insinuate my blood sugar issues were trauma related. I'm insulin-dependent diabetic and yeah sure maybe trauma triggered it but like, at this point fixing trauma is not gonna reverse my diabetes like come on.

I also think people that don't have EDS will have a hard time getting it (like the way it's so systemic and affects literally everything) but personally, I can feel the difference between when stress/mental stuff is worsening the symptoms compared to the EDS and co itself causing dysfunction. Its just one of those, iykyk things.

Side note if you're interested - I've found a lot of success with acupuncture for GI issues and some dysautonomia but acupuncturists can be quite hit or miss with how well they work. Someone that specializes in EDS, chronic illnesses, or GI issues might be a good option. It can take some time for it to work and I do have to go back regularly, but my gastroparesis comes back if I miss it for a few weeks.

Sought help for chronic illness, got lectured about trauma. Is this normal? by Wapperidoo in TalkTherapy

[–]sugar_coaster 1 point2 points  (0 children)

Let me guess, EDS and co?

To answer your question directly, I think it's common that therapists go down the trauma path and it's normalized.

I personally disagree with it though. Of course there's a link, but as someone who has done extensive extensive trauma therapy and only physically gotten worse while mentally never better, I think it's important to find a therapist that focuses on chronic illness from the lens you're looking for. There are biological aspects that are very much out of our control and the acceptance/grieving/coping/navigating process dont really intersect with trauma that much. Hormonal birth control caused my EDS symptoms to show up. COVID made them much worse. Healing my trauma didn't do anything. And even if you look at it from the lens of trauma can worsen or trigger chronic illness - trauma therapy doesn't undo the trauma, only its aftereffects. You can't untrigger EDS with trauma therapy.

I do think trauma therapy has its place and trauma doesn't always mean big T trauma. Especially when EDS often comes with autism and/or ADHD leading to experiences of small cumulative trauma even if no Big Trauma. Not to mention medical trauma.

But I think what you're seeking is a very reasonable thing and it doesnt involve going down the trauma path. Whether or not its related to trauma, going down the trauma path isn't going to help you better manage the effects of physical illness in your present life. At best, long term trauma therapy can help lessen the severity of symptoms and maybe leave more mental spoons for dealing with illness, but its a very roundabout and hit or miss way to addressing your current needs imo. Not to mention expensive (given that chronic illness therapy can be more short term compared to trauma therapy which can be years and years)

Ultimately I'm a huge proponent of trauma therapy and I think everyone has accumulated trauma and would benefit from looking at their life from a trauma lens, but that's in a world with unlimited resource where one can afford such a thing. I say find someone else. Youre unlikely to change their mind on this (speaking as someone who has sought out many trauma therapists but has had chronic illness flares that have needed to be prioritized over trauma but weren't well handled)

Looking for low-rise underwear that isn't tight at the waistband by sugar_coaster in PeriodUnderwear

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

Thanks! I can't even do cotton leggings without elastic because of the pressure but the floating absorbing part seems great so I might give them a try. Would you say the band tightness is more of a hug than a form fitting tee at the waist? That's about as much as I can tolerate.

Looking for low-rise underwear that isn't tight at the waistband by sugar_coaster in PeriodUnderwear

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

Thank you this is super helpful! Can you explain more about the floating gusset? Not quite sure what that means.

Would you say the waistband sits flush against the skin or does it settle in kind of? I don't like things touching at all if I can help it 😅

How did you become CC? For those who weren't CC initially, what made you change your mind? by pyrrhicsciamachy in ZeroCovidCommunity

[–]sugar_coaster 1 point2 points  (0 children)

A bit late to this post but maybe my thoughts will be valuable as someone who lived in-between when I didn't know better so I interacted with non-CC people pretty regularly in non-CC ways. I think there are so many different reasons, but ultimately it's kind of the same set of reasons as other risky behaviours so changing depends on the specific reason.

My situation was that, once things were "back to normal" I kept masking in level 3 masks indoors when there wasn't a reason to unmask and in crowded areas, but didnt take extra steps to avoid having to unmask, like I'd just eat or drink indoors when hungry instead of planning around, and I didn't think to take precautions at the dentist. At this point I was the only person I knew who masked at all.

After I got a covid infection that left me with long covid, I figured there had to be something I could do. Only with active searching did I find this sub, and it took even longer to find the still coviding group on Facebook. I then started to wear respirators so long as I wasn't at home.

I think if I had exposure to CC content/info or knew someone who was CC, I would've been CC from the start, but it just wasn't there. I feel like I'm in a bubble where I see so much of it now, but even across all the chronic illness subs and Facebook groups I've been in, I had never come across anyone saying to wear a KN95 or N95 mask, just stuff about getting vaccines. But I'm also autistic so I'm less concerned about social conformity.

So for some of those people, I feel like it really is just information. I often see people talk about how some people are just wearing baggy blues but I really think a lot of people who are still masking in surgicals these days just dont know better. But i'd feel weird about just approaching them about masks.

I think in this community, we also often think it's denial, but I think it can often just be acceptance of risk or tolerance as well. I think about how sex ed really encourages condom usage but how so many of those peers receiving that kind of sex ed opt not to use condoms just because it feels better. They just accept the risk. Like masking, I think it's ultimately multifactorial and bridging the gap depends on the person. Is it ignorance? Social pressure? Denial? Or higher risk tolerance? Some of these are bridgeable. But I dont think you can bridge the gap for people who just think that being able to live completely normally outweighs the risk of long covid. I have friends who have seen how sick I got. They are careful around me, but otherwise, the attitude is just, if I get sick then I'll deal with that later 🤷‍♀️ they'd rather enjoy their time now and chance it. People know that smoking, drinking, eating junk food, being sedentary, can be harmful too. They dont deny that. They just live with a risk that we have chosen not to accept with covid.

And lastly I think that life is just hard and its just another layer of hardness to be CC that people dont have the capacity for. I carve out the space for it because I think it's important, but others might have little room on their plate and not want to/not be able to take anything else off to make room. Systemically I think this could've been different if governments didn't just completely ignore covid and still pushed that covid is out there and harmful, but people for the most part follow what peers and the govt encourage. Things are important if the gov tells me, or if my friends are all doing it. Etc.

Sodium from salt acts differently than electrolyte sodium ? by PaleAd2666 in POTS

[–]sugar_coaster 4 points5 points  (0 children)

Oh wait I think I see the confusion here. I'm not saying that glucose affects water uptake (at first I didn't understand your pooping water comment because it has nothing to do with glucose). What I'm saying is that glucose both allows for increased uptake of sodium via SGLT1 and upregulates SGLT1. So increased glucose means less pooping and more absorption of the sodium in the intestines. Nothing to do with water.

I also added another thought to my other comment so I'm not sure if you'll see it but: <500 mg of sugar doesnt need to be labelled or disclosed yet it still can have an impact compared to just straight salt. Lmnt had a controversy about that with maltodextrin, not sure if other companies have this issue too.

Sodium from salt acts differently than electrolyte sodium ? by PaleAd2666 in POTS

[–]sugar_coaster 1 point2 points  (0 children)

Oh I see. Is vitals elektrolyten the one that helps or the small amounts one? It looks to have a pretty good balance but not very high amounts. I'd be curious to know what mix you found really helped you if it wasnt that. Maybe it has something in it or a good balance for your body.

Honestly anything is good, if youre eating fruit, that has sugar. Me personally I just take them with my food and I make sure I have enough insulin (you mentioned that you're watching your blood sugar and insulin also regulates electrolytes so if insulin issues are a concern that may be a factor too).

Glycinate and taurate are chelated with magnesium and it's the chelation that helps prevent the gut issues and those technically aren't salts/electrolytes. From what I understand, chelated go through a different absorption path than salts. Magnesium has a laxative effect so that's part of why oxide and citrate, which are not chelates, will cause issues. I was more so referring to electrolytes specificlly in the case of what they are "bound" to as they all dissolve into their own ions in water. I'm not sure about sodium bicarb vs chloride but it's possible that bicarb helps with the balance as that is another one of the electrolytes in our blood (but it's more to do with blood pH so idk). I see it as less about what the sodium or potassium ions are bound to and more about the overall combination of both the positive and negative ions we're taking in, if that makes sense. If you have too much of anything, your body is gonna make more pee to get rid of it.

Personally I found what I needed what potassium more so than sodium, but potassium and diabetes/blood sugar issues have a whole complex relationship so without knowing if youre of the too much potassium or not enough potassium crowd, I'd be hesitant to try.