chronic optimist

And for those people who have access to mobility devices but might benefit from a second chair they can abuse without risking expensive damage…

Erik Kondo has made a website, Open Source Innovations, that details plans for DIY wheelchairs. These wheelchairs can be made from common materials like wood, plastic, and pvc. They are lightweight and can be custom fit to the user allowing from the same degree of movement you would get from a custom chair. And they are durable and easily repairable. (he has been stress testing his latest design by dropping it down stairs, dropping it out of a car, launching it across a driveway, and throwing it off a deck). Its 12lbs and I think he said its was in the $200 ish range for parts.

what would have to go wrong in your life, and how wrong would it have to go, for you to stop bathing? to stop eating? to let the garbage pile around you until you can no longer see the floor?

how bad would you have to feel, and for how long, before you would stand on the street screaming at anyone & anything? beating your fists on your head and crying? how bad would it need to be?

To recover, you literally need to manually learn skills that most people learn as a toddler

You need to learn what makes your body uncomfortable, and what to do to fix it

If you are high-masking, that usually means that you have learned to ignore every distress signal your body sends unless it is a distress signal that a neurotypical person would recognize. People have likely been unintentionally gaslighting you about your lived experience your entire life

If you feel bad or panicked for no reason, stop and try to pay attention to your body. Are you tense? You are likely feeling physical pain somewhere. If you've been gaslit about your pain your entire life, you might not be able to identify it.

Go through a sensory checklist.

SIGHT: Try closing and covering your eyes. If this gives you relief, the lights are probably too bright. You may also need differently-colored lights

SOUND: Cover your ears. Does this give you relief? If so, you may need earplugs or noise canceling headphones. You may also benefit from a neutral or pleasant background noise, like soft music or brown noise.

TOUCH: Are your clothes uncomfortable? Your chair? Your body? Do you feel greasy, like you need a shower? Do you need softer, sensory-friendly clothing?

TASTE: Do you need to brush your teeth or tongue? Would chewing on something help?

SMELL: Is there a strong or unpleasant smell in the room? Do you need to clean or empty a trash can? Would an air purifier help? Would a pleasant smell like a candle help?

INTEROCEPTION: Are you hungry? Thirsty? Tired? How is your posture? Are any of your muscles tight or sore? Scan your body slowly from head to feet, tensing and loosening each group of muscles. Going for a walk or doing a series of quick stretches may help a lot.

Learning how to do this stuff is not intuitive, if you've had an entire lifetime of gaslighting telling you that everything hurting you isn't a big deal and you're being dramatic over nothing.

This takes time, it takes work, it's not intuitive, and it's hard. Most people forget how hard it is, because they learned this as toddlers.

People often ask me about my unmasking journey and express surprise to hear that such a big part of it has been 1) accepting I must avoid light/the sun and 2) wearing clothes I can stand.

I’ll play it jokey and say it like “well it took me far too long to realize that my former wardrobe made me want to jump off a bridge.” Or “turns out my old underwear was anti-autistic.” Or “for whatever reason when it’s too bright, I can’t think.”

like, possibly with the sense that using the call bell is rude/demanding?

the other thing is that a lot of times when i come in your room, i’m actually doing med pass for all of my patients

generally i have about two hours to pass all my meds. i work somewhere with a pretty good patient-to-nurse ratio. i have 24 minutes per patient every med pass. for many nurses at average hospitals this will be 20 minutes or less.

but that includes everything, from pulling your meds to clarifying orders with docs to actually scanning and giving the meds to doing my required physical assessment etc. possibly hunting down another nurse for a co-sign or narcotic waste.

and if you wait for me to show up, then it also includes basic care tasks, too

i do not think i’m above doing “CNA work.” if you need something please tell me!

but! my floor has aides to assist the nurses with basic patient care for this reason. if you ring, they’re likely to be the first people to respond (because i might have just walked into another patient’s room, and my 24 minute timer for them started counting down already!)

the aides are unlikely to just pop into your room on a regular basis, though. so using your call bell lets us make sure that your needs are met, but it also makes it possible to delegate some of those tasks to the staff members who arent working against a clock