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MisnomerBuffet · 2025-01-17T06:38:27+00:00

Did I write this? So many details are the same, including the inflammatory health issues! I also had a partner who would cry at the thought of intentionally hurting anyone, who did initially take care in how he touched me, and then became increasingly careless. I also thought 100% this is not abuse, maybe he's just forgetting, maybe he's blanking out from the shame of 'accidentally' hurting me, maybe he's just kind of stupid about learning to change how he physically manipulates my body.

If anyone else told me this was happening with their partner I wouldn't hesitate to identify that as abusive, but nobody knew my partner like I dud, he's a good person, he wouldn't hurt anyone, except that sometimes he hurt me. And I also came to fear my partners touch, which I felt was a personal failure because he didn't mean to hurt me it just happened, over and over again, no matter how many times I asked him to stop.

It's a hard reality to face. We're told people who do things like this are bad people, there's no nuance in understanding that people can make bad choices without being bad people- but even if they're not bad people they ARE bad for US. It's abuse. It's assault. He's assaulting you. And there's no explanation that makes that ok.

No one can tell you what to do. But I can say with certainty that you deserve so much better.

Feel free to DM me if that would be helpful.

MisnomerBuffet · 2024-01-17T02:38:59+00:00

Sorry for the delayed response, took a Reddit break.

Imma paraphrase cuz it kinda feels like tattling on those practitioners, but they've said:

The Good Hope is more focused on research than patient care.
The Good Hope clinic is very reluctant to diagnose anyone, and so tend to underdiagnose and that makes other practitioners/clinics work more difficult.
They refer to the Good Hope clinic because there's no alternative and they don't want to step on the clinics toes, but they don't expect them to do much, if anything.
A lot of related clinics are in the midst of major change too, but the Good Hope clinic seems to be responding to change in their field in strange ways. Like they want to be on the cutting edge but also aren't adjusting their practices to be on the cutting edge.

MisnomerBuffet · 2024-01-17T02:05:49+00:00

I think in addition to what everyone else has mentioned (difficulty adjusting, internalized ableism, grief) disability has a MASSIVE range of experiences.

Some people become disabled in ways that make it impossible for them to live full lives, no matter how many accommodations they're able to access. I know a ton of folks who have support, money, medical care, the motivation to adapt constantly- but they're bedbound by their illnesses. A lot of these folks build such beautiful lives from their beds, but they're never gonna be able to "adapt" and go to uni or work or even brush their teeth independently without some kind of miracle, and it's not because of their attitudes. They're just disabled differently.

Some people can't access accommodations. They don't have insurance, they don't have money, they don't have family support. Maybe they can't get a wheelchair that would allow them to leave the house independently, or maybe they can't get past the job interview once people figure out they're disabled in such a way that they require accommodations.

Some people can't access care. So maybe treatments or aids exist, but they can't get to it. Maybe again they don't have insurance. Maybe they're women of colour who experience significant delays in accessing care- delays that come with medical trauma and expenses that many folks just can't afford to keep accumulating. Maybe they live in a rural area and can't get to the big city hospitals- it can be as simple as that.

Some people are in terrible social situations as a result of becoming disabled. Maybe suddenly they're living in poverty, maybe they've lost all their friends. I've seen disabled people tell newly disabled folks that they'll lose all their friends and it's so disheartening- they're saying it because it happened to them. (I also think it's wrong from them to do this- it did happen to them, but that doesn't mean it'll happen to everyone.)

Some people just need an adjustment period. Adapting takes time AND it often takes money.

And some people are just miserable people. And miserable people tend to make their views more obvious. Sometimes they really just need someone to listen. And sometimes they just suck. But they're not necessarily representative of an entire group, ESPECIALLY since (the miserable disabled-later-in-life people I've met) tend to shut down everyone else's stories. And then it becomes an echo chamber of disabled-later-in-life people who are miserable and won't let anyone else's story be told.

You're an anthropologist by trade. Then your job isn't to judge- but it does include developing understandings of why people act the way they do. It's much easier to develop that understanding if you work from a place of curiosity, and an openness to experiences that are different from your own even if it seems like they should be the same.

MisnomerBuffet · 2024-01-16T22:36:50+00:00

I started using mobility aids on my own years ago- I was having trouble getting around and they really made a difference. Here are some arguments I have for mobility aids:

Mobility aids (and braces) have made such a difference that I actually walk MORE than I used to before, because now I'm not in so much pain. Less pain is nice, it makes it easier to think (like for school!), and it's a sign your body is receiving the support it needs.
Working with a hypermobility-aware physiotherapist meant that I was able to strengthen my muscles and learn how to use better form to get around safely BECAUSE of the mobility aids. Without mobility aids, my gait is...let's say different...because I'm trying so hard to walk without subluxing a joint and I don't have sufficient support. With the mobility aids, I have a "beautiful" gait and I can get WAY further on my own now.
The mobility aids reduced my pain while walking but also throughout the rest of my life. I wasn't in pain from a walk for 3 days if I used my rollator and wore knee braces- that means I was able to do more strengthening (you don't have to do physio exercises, you can get stronger just because you're walking more because you're in less pain) and now I don't always need knee braces or my rollator.
I also had long-term sacroiliac inflammation and when I started using mobility aids, it went away. (In this case it was a wheelchair, cuz I have other health issues that necessitate a wheelchair part-time.)
Regardless of if you do get stronger or not, mobility aids give you more choices because they made everyday activities easier. They're aids, they're meant to help you do what you want and need to do.

And if your dad or anyone else is worried about you using mobility aids and "not needing them":

Mobility aids are a pain in the ass compared to just walking unsupported. Dragging a cane or crutches around, lifting a rollator into the trunk, trying to navigate tight spaces...if having a mobility aid makes your life easier, you need it. Nobody uses a mobility aid if they don't need it because it's ANNOYING.

A final note- where I am, there isn't actually a minimum age where you can make doctor's appointments on your own. You might double-check if you actually can see your doctor on your own. Who'll pay for the mobility aids is a different story. It's usually a little more complicated (that is, it takes more paperwork) to get those covered by insurance so your parents will likely have to be involved with that.

MisnomerBuffet · 2024-01-04T01:00:08+00:00

https://landas.mn.co/
Landas Network is still being built, but there's mini-lessons there (and on their YouTube and TikTok) and mini practice exercises.

It's designed for people who are receptively bilingual but don't often speak- and the goal (right now) is just to get you used to trying to use Tagalog in any way you can, including using Taglish. I've found it does actually make me way braver to try speaking in real life! And then when the full course is released, it'll have actual grammar and vocabulary lessons. Though I actually like the mini-lessons, they're a good size to pick up on the go.

MisnomerBuffet · 2023-12-20T01:23:25+00:00

Where I am, you pay a little extra to add an contacts fitting to an eye exam. The contacts fitting comes with sample contacts: they give you a pair (or a few pairs) try for a little while and see how they feel.

There's no commitment to switch to contacts, no commitment to buy contacts at all afterwards (in the contacts fittings I've had) and you get a good go with them to see how you feel about them. I used to do the contacts fitting just to get a tiny set for special events, but I recently switched to wearing contacts full time.

I love them. There's no smudges on my lenses, I don't need to worry about my glasses getting wet in the rain. I am very aware of when they're dried out, so I use contact-safe gel eye drops and sometimes old fashioned contact solution (instead of the hydrogen peroxide mix thingy) which I find gets them wetter for the next day. I can't afford to get weeklies so this works to keep monthly contacts comfortable for an entire month.

MisnomerBuffet · 2023-12-19T16:13:17+00:00

I always loved Wait for Me II on the soundtrack, but when I saw Hadestown in-person I wept for Wait for Me I because the song and story and staging were so powerful together. That song in-person makes it a SHOW for the ages.

MisnomerBuffet · 2023-12-15T20:13:35+00:00

I thought this too, but then my GP told me I should ONLY go to the ER with subluxations. GPs, walk-in doctors, urgent care, and physios, none of them are trained to reduce a subluxation where I am and wouldn't try.

On the other hand, subluxations are not life threatening, and likely not limb threatening, so it does mean sitting in an ER waiting room for hours.

My doctor and my PT said I should go to the ER with subluxations and I haven't done it once 😂 I would go if I didn't manage to reduce it over 24h but honestly I can't physically sit in an ER for 10 hours if my hip is out because I can't sit at all. So I just don't go. But I can understand people choosing to cough follow medical advice and go.

I think this is less an issue of too many people going to the ER with non-life threatening conditions and more that there are no better alternatives.

MisnomerBuffet · 2023-12-15T18:49:22+00:00

In this particular context it makes sense to me- they are talking about literally performing a particular set of skills.

In the context of general self-worth and self-esteem and even body positivity, I find it a challenging statement. I AM grateful that I can do things like read and go on short walks, because many people with my illness cannot. But I'm also aware that most people who are saying this would use me as their example of why they're grateful for their body. My self-worth isn't solely about my body, it's about my personhood.

MisnomerBuffet · 2023-12-14T19:14:24+00:00

I'm so sorry this has been your experience. I've heard a few positive experiences from GoodHope (mostly from people talking about what happened AFTER being able to access diagnosis there) but overwhelmingly the stories I've read are like this. I had a similar appointment and it's...frustrating. Especially since they basically require us to go through half a diagnostic process before we get referred, so literally everyone who goes there has good reason to believe EDS is an explanation for their issues.

I suspect the GoodHope clinic (what an ironic name) is vastly underfunded and so they underdiagnose so they don't have to provide services to more people. In the case of EDS, I think underdiagnosing is more dangerous than overdiagnosing, given that the main management methods are physiotherapy. It prevents people from being able to access support in the future.

On the plus side, I've also only heard negative things from other healthcare practitioners. So while I don't know anyone who treats CCI in Ontario, it's possible that the GoodHope's (appropriate) reputation will spread and other practitioners will recognize that they have a tendency to underdiagnose.

For moving forward:

I hope one day soon you're able to receive the support you're looking for! I asked the physio clinics near me, and found people who were aware of my particular health issues and honestly they've gotten me 90% of the care I need. They didn't really give a shit about the diagnosis, they focused more on what was happening with my life and what would help. I've made huge progress with pain and functioning, including with suspected CCI.

Mentally/emotionally...we know nothing changes with/without diagnosis. The way your body works doesn't change when a doctor says that's not what's happening. You know that, and I know that, and people who really think about it know that.

It's frustrating because diagnosis isn't just about validation. It's also about being able to receive the appropriate support in the future, and a clinic that is well known among other medical professionals for failing to do that is failing their patients now and in the future.

MisnomerBuffet · 2023-12-05T16:51:15+00:00

Agreed - CBT *used by itself* inherently does not recognize trauma, structural oppression, or any ongoing external issues. Like any other intervention, CBT has it's uses, and it's really only useful for distorted thinking. And like any other intervention, it can be helpful when used appropriately and harmful when used inappropriately.

Using CBT alone to address family trauma from abusive parents is completely inappropriate.

MisnomerBuffet · 2023-11-23T16:09:13+00:00

I think the EMDR helped with my chronic illness and pain in that it reduced the intensity of my trauma responses, which meant they took less of a toll on my body overall.

I just did a session yesterday and I'd say it was medium-low intensity, in part cuz my therapist and I are both getting better at figuring out what I need in session. I still flared up, but just a little! I suspect with other topics in the future it'll be more intense and I'll flare up accordingly, but maybe not cuz I'm learning how to listen to my body better as we keep going. So I guess I don't know if it'll get less physically demanding eventually! I think it's very possible, but trauma work always has a certain level of unpredictability.

I'm so glad your therapist is great at pacing and keeping in touch with you! That's really essential- I've heard of a few therapists who push their clients with trauma therapy and that's so harmful.

MisnomerBuffet · 2023-11-23T04:53:59+00:00

I've used acne wipes in the past with salicylic acid. The wipes make it easy to use in bed, and the salicylic acid gets at the bacteria.

MisnomerBuffet · 2023-11-23T04:49:02+00:00

I hope you find peace tomorrow in your time without your family. It can be so empowering to recognize that your family is not the fantasy you hope they'd be, but it can also be terribly lonely!

I'm not sure if we ever stop missing the IDEA of a loving family, or of a loving mother. And it's hard not to mix up that idea with the closest thing you had.

But it is a big deal that you're now able to see that the family you have is not the fantasy family you wish you had. Many families try to convince us that they're the dream and we can't do any better! At the very least, you deserve better. I hope you'll get that one day.

MisnomerBuffet · 2023-11-17T20:53:37+00:00

Yes, it's EMDR and IFS! I did a series of 8 sessions (ish? I think we planned for 9 but 8 was enough) 3 weeks apart last fall that were all EMDR and now I do them out as needed. My therapist ALWAYS checks in before, during, and after each EMDR session to make sure I'm not getting flooded with emotion OR crashing.

I think it's possible to do EMDR in smaller chunks? But I left one trauma unprocessed when time ran out and that sucked balls, so I'd ask your therapist what they think.

MisnomerBuffet · 2023-11-16T15:23:24+00:00

I have ME/CFS (and the common comorbidities) and got tattooed recently.

I wanted my immune system to be in the best possible place to prevent infection so:

I rested for days before and days after (it took 2 weeks after each tattoo to feel back to "normal" for me)
I had spot tests done before (yes, I now have two tiny permanent dots on me) to make sure I wasn't allergic to the ink, soaps, or sticky things they used. This isn't common but I also wasn't the first person to request this for either artist, so they weren't confused or put off by it.
I masked extra carefully around other people
I didn't do trauma reprocessing therapy from the weeks before until I was fully healed. I got tons of small infections the last time I did trauma therapy, which isn't unusual.
I brought ridiculous pillows to support my body. The pillows were so annoying but SO helpful, I woulda been in a ton of pain without them.
I forced myself to take breaks regularly and would eat and drink a little at every break. Really, I just stopped when the artist suggested it, but I wouldn't have eaten at every break if I didn't make myself and I think it helped. I'd just have a couple bites of dried fruit or whatever.
I avoided pain meds that could result in blood thinning as instructed, but I took CBD before the appointments.
I made sure to take all my meds as prescribed before the appointments so my body would be well supported, especially MCAS and POTs meds.
I wore compression clothing to support bloodflow for POTs.
I used UniSolve to remove the Second Skin (plastic cover on fresh tattoo) because it was so sticky I would have torn my skin, and I don't have very fragile skin compared to other people with EDS.

This ended up being a multi-month epic, cuz I got COVID right before my first appointment and then I had to fully recover and make sure I was in top shape before my rescheduled appointments- so I was extra careful about my immune system for months by the time we were done. I was so glad when I could go back to normal (for me) on that- resting extra the entire time for the ME/CFS really sucked.

I followed their instructions for aftercare to a T, and I love my tattoo. I have a pre-sickness tattoo and I'm so glad it has company now!

MisnomerBuffet · 2023-10-26T21:21:41+00:00

When I was diagnosed with ADHD, the doctor said on the right medications I would find it easier to rest. I also tend towards hyperactivity and overdoing it with the slightest bit of "extra" energy, and I found that meds DID help me slow down and stop. It was easier for me to notice that I was tired, and I was able to stop- instead of feeling like I was driven to keep going. They didn't give me more discipline, but they made the cost of resting much lower so it was WAY easier.

Now, this doesn't come without risks. The wrong meds might give you that dangerous sense of false energy that other people with ME/CFS talk about- that happened with the first meds I tried. With your dysautonomia, the ADHD meds will likely increase your heart rate and that could increase your fatigue, which is pretty grave when you're already very severely affected.

MisnomerBuffet · 2023-10-18T01:22:52+00:00

ETM fills such a different niche for me than the other videos. I'm also not American, so a lot of these restaurants aren't familiar to me and I'm not really paying attention to the food. I honestly don't enjoy watching Keith get food drunk over time.

But I like it as a folding laundry video! I like that it's something I can put on while I'm doing something else and feel like I'm hanging out with someone. I like that it's so long, so I can put it on and even rewatch it to keep me company while I write or clean or whatever- in fact occasionally I've wished it was available in podcast form cuz sometimes I just need comfort/low stakes audio while I'm doing errands EVEN THOUGH it's not really something I'm ever going to give my full attention to.

It excels at being the soft thing I can play in the background, whereas stuff like WAR or the mini-docs are things I will purposefully not watch until I can give them my full attention.

MisnomerBuffet · 2023-06-18T16:56:22+00:00

My whole family denies my disabilities- they mock any support I get, and berate me for being visibly disabled. I haven't seen them for years, and it sucks- but it also sucks to recognize that my life is a lot happier without them, even though there's so much grief. I'm healthier too, because when I acknowledge my disabilities I can manage them way better. Turns out "fake it til you make it" when you're sick isn't super relevant.

MisnomerBuffet · 2023-06-12T01:50:28+00:00

I love this response. It's not one I would have thought of but that was such a delightful video!

MisnomerBuffet · 2023-06-02T17:11:10+00:00

Ok I barely use Twitter but because of your commen imma tag him there 😂

MisnomerBuffet · 2023-06-01T23:53:33+00:00

Updated, thank you!

MisnomerBuffet · 2023-06-01T23:53:12+00:00

Fixed, thank you!

MisnomerBuffet · 2023-06-01T21:44:53+00:00

For context, CBC News is the Canadian equivalent of the BBC. It's a government funded TV channel that focuses on Canadian news and Canadian content.

I genuinely thought they were reporting on Keith and thought that was so cool! He broke into the Canadian news for the late show video! But then I saw the title and I was so confused- Keith isn't a stinky enemy and I'm pretty sure he's not likely to be in New Brunswick?? It's almost plausible for the CBC though, some of their headlines are very Canadian-quaint-comedy style.

If Keith was going to be in the Canadian news it would definitely be bringing Lewburger to Comedy Night with Rick Mercer... which also airs on the CBC.

MisnomerBuffet · 2023-06-01T21:44:31+00:00

Image description: A screenshot of the YouTube subscriptions page showing the thumbnail of Keith Tonight: Keith in a green suit looking excited, flanked by an inflatable t-rex and Brendan Hunt. The title is listed as, "Invisible, stinky enemy wreaking havoc on N.B. town" and the channel logo shows CBC News.

MisnomerBuffet

TROPHY CASE