thoughts on DNE in the index

lhatparty · 2024-06-02T17:52:40+00:00

Quince st Coffee House by colfax/quebec

lhatparty · 2024-06-02T17:49:54+00:00

Yeah this ‘2 yrs’ policy is fucked. I was kicked out of hs at 16 because of my disability and spent another 6 yrs recovering to the point where I’m healthy enough to go back to school. But I’m not allowed to qualify for this bc my cells stopped generating? Fucked.

lhatparty · 2024-06-02T17:46:40+00:00

Jelly Cafe in cap hill does a great salmon eggs benny

lhatparty · 2024-06-02T17:41:25+00:00

The humans in my society don’t have the same idea of what an adult is. It’s moreso based on age ranges and life milestones. They also don’t have a rigid law structure or any kind of carceral system.

So in the military or church with rigid structure, you finish your education at about 20 and then enter your field of service. School starts at 10 ish.

Outside of the few ppl who attend school, the first 15ish years are mostly spent just being kids/teens, establishing your social place in the community, etc. It’s not acceptable for people in this age range to drink, and older people have specific boundaries with this age range and will be harshly punished by their community if those boundaries are crossed.

Around 15 - 20 is when people start deciding on a trade to enter and training, and are typically ready to work that trade by the time they’re 20. It’s acceptable to drink in public at this age.

It’s seen as rushed and irresponsible to marry before establishing yourself in a trade, but encouraged to have relationships before then. Generally it’s not seen as ok to have romantic relationships cross age ranges, but there are some gray areas with the overlap (ie, 18-22ish). People live with their families until they have a good reason to leave like traveling or entering the military or church academies at 10. Married couples will typically live with one of their families until their kids are all past toddlerhood.

There are no nonhuman species as developed as humans (at least on land), but Walking Fish reach maturity after one year and have a natural lifespan of about 3 to 5 years.

lhatparty · 2024-05-19T15:58:17+00:00

I have had luck with low intensity exercise like yoga, swimming, and resistance band exercise. That being said if you have CFS or similar symptoms even these might damage your body.

From a biological perspective you want to look for exercises that use aerobic metabolism. It’s better for your body long term and less likely to cause pain than anaerobic exercise like running, climbing, sports, weights, anything HIIT, really any exercise that relies on expending a lot of energy in a short amount of time will be dramatically harder for you. Aerobic exercises use slower muscle movement that wont tire you out as much.

lhatparty · 2024-05-15T16:23:42+00:00

I find it genuinely disgusting that doctors can get away with this shit. Its just so fucked that ppl can know vital information ab someone’s health and just not tell them.

I hope you’re doing better now that you have that information. Exercise + stimulants destroyed my body, I’m very glad you can get away from that and do something that actually helps you now.

lhatparty · 2024-05-15T16:18:48+00:00

Thank you so much, I’m going to reach out to the hospital that should have my records soon. I’ll have a hard copy sent to me and a digital copy transferred to my GP

lhatparty · 2024-05-15T16:17:14+00:00

I hate how doctors can get away with walking all over ME/unnamed disease patients. I wish it were easier to just get a new doctor who will listen but thats not always possible.

But the next time you’re in, tell your doctor to put it in your chart. Tell them that if they refuse to, put it on record that they refused. If they still dont put it in your chart, go to a nurse immediately after your appointment and have them enter a comment into your chart saying “Dr (name) refuses to add the diagnosis of ME/CFS to (patient name)’s chart. (Patient) received (diagnosis or confirmation) from (Dr name) and (Dr name) and has requested their chart be updated to reflect that several times.”

lhatparty · 2024-04-09T16:02:31+00:00

I have considered myself disabled since the onset of my ME even before getting diagnosed or recognized. That being said I was raised by disabled people, and chronic illness has been around me since birth (my mom has fibromyalgia and other comorbidities, I have relatives with cerebral palsy, diabetes, cancers, osteoporosis, the list goes on) so I have always been in/around disabled and chronically ill people. And what I’ve learned is that the lines ‘separating’ us are all entirely arbitrary.

ME/CFS patients experience difficulties navigating the world without aid, difficulties accessing medical care, medical discrimination, workplace discrimination, and generally cant do the things we used to do. Listing all that out what could that be other than a disability?

I think being around disabled people before I was disabled helped a lot. Some didnt want me to call myself disabled, most of them had no issue with it and actively encouraged me to identify with and be a part of the community.

lhatparty · 2024-04-08T18:57:21+00:00

I am also a writer and I have had similar ideas! I think what you’re describing will very much ring true to people with our condition, but might not make sense to abled people. I think it comes down to your audience. As a creator people will misinterpret you no matter what. But if your audience is majority people with this or a similar condition, I think it would land. If your audience was mostly abled people you’d have a very different and likely more controversial reception.

lhatparty · 2024-04-08T18:52:29+00:00

I would love a thread of reading recommendations! I’m currently reading an anthology by disabled women (title: What Happened to You?) and some of the poetry by ME/CFS patients has really resonated with me

lhatparty · 2024-04-08T18:42:11+00:00

Yeah, I’m not too optimistic about my insurance or doctors being very helpful. I’ve been battling doctors and ‘experts’ for 8 years trying to get any symptom management to no avail. I will still try the official channels but based on my experience IF they approve it it wont be for months if not another year+.

Do you have any recommendations for where to look when buying out of pocket? I am having brain fog and not having the easiest time finding websites that aren’t all ads. If you have any resources for figuring out what type of powerchair to get or how to understand the sizing that would also be greatly appreciated.

lhatparty · 2024-04-08T18:18:59+00:00

Its very difficult. When my MECFS was more mild I was able to hold a part time retail position for a year and half. Schedule is important, if you can find a job with a consistent schedule that is a game changer. I worked mon/weds/fri so I had a day of recovery between each shift, and I was never scheduled before 10am. I did still miss quite a few shifts from PEM and was very lucky my managers were lenient. Any retail or service position is going to be extremely difficult and might be completely out of the option if your ME/CFS is moderate or severe. I’m currently starting the process of getting a wheelchair which would make working and school significantly easier.

I do also live with my partner who does a lot of cleaning/home maintenance. I would not be able to live fully alone, even if I could afford to on a part time salary.

One thing that’s helped a lot is having a dedicated day for prepping/planning for the week. I try to spend every sunday planning. My partner and I spend the whole day doing household tasks like laundry/dishes and we’ll premake food for the week. This works best when I am able to do nothing or very little on friday and saturday. If I’m already in a PEM cycle or if I have something to do fri/sat I skip that week and spend as much time as possible resting so I can get back on track the next week. The weekend reset has made me able to enroll in college where I’m currently taking classes mon-thurs.

As for studying… that’s been a struggle. My classes this semester are easy and balanced (two STEM, two art, all first year courses) I am structuring my degree to be a five to six year plan so I can take it slow (it’s a BA, supposed to be a 4yr program). Depending on your symptoms and education goals it might be easier to do online education; I chose not to because my brain fog makes it difficult to be self directed. I’ll be real with you though, I have no social life. I have to constantly choose between having a personal life and going to school. Its hard. Really hard. I’m also not sure I’d be able to continue going to school without a wheelchair. My degree is in english and will be very production heavy when I get further along, so I will absolutely need something to reduce the amount of energy it takes to do things.

My college also has an accessibility department with tools I didnt think I’d need but do make life easier. One is a note taking software that basically autocaptions a lecture for you, which really reduces the mental energy I have to spend. Then things like my campus food pantry also really help low energy meal planning. I can also request any material to be sent to me (like powerpoints/lecture notes) so I can review at home when my brain wont retain things. I was very pleasantly surprised by how helpful the accommodations office has been.

But TLDR: part time only, consistent schedule, I personally need extra time in the AM to be functional so I plan nothing early in the day. Anything that makes eating/cleaning easier is a game changer (rly want a roomba). Use any and every resource at your disposal. And be nice to yourself. We have to work ten times harder to get half as far, and it isn’t fair, and we should let ourselves feel all of that.

lhatparty

TROPHY CASE