Doctor Who

[visorforavisor]

I think disability justice would be easier if abled people understood that being disabled is a mixture of all three of

I can’t do that without negative consequences

I can’t do that unless I have support for it

I can’t do that

and that trying to treat one of these as if it’s another one will get you nowhere.

[doctorwh0nerd]

I also wish they would just take no for an answer, like it's great you are trying to include me and make adaptations, but I simply cannot participate and that's okay.

[doctorwh0nerd]

This ☝

[moreartspamforfriends]

gotta love when the disability makes you feel like a piece of shit who cant maintain any sort of commitments :/

cant do fun things with people you care about when youre forced to sleep all the fucking time

[panulyx]

Too much movement makes your joints hurt and too little movement also makes your joints hurt. This would imply that there's an optimal amount of movement that allows your joints to not hurt. This is a lie.

[tizzychardia]

This is honestly the best way I've found to explain POTS to people who don't absorb medical information well. Unfortunately, I have to portray myself as William Afton to get my point across.

Springlock suit.

We are constantly inside a springlock suit.

During the day, when we are wearing compression gear, hydrating, intaking sodium and electrolytes, taking medication, regulating our body temperature, taking breaks, eating smaller meals, managing our diet; all of those symptom management tools are metaphorically winding the springs inside the springlock suit to keep the animatronic parts coiled back.

But if we move too much, if we get hurt, if we neglect to manage our symptoms, aka not winding the springs, we flare. The springs snap back and impale us with metal from every possible location on our body, and we get stuck for an extended period of time.

My friends don't really do well with medical terminology, and we all tend to find it a bit depressing, so this metaphor seems to help. If they ask how I'm doing today and I send a picture of Springtrap, they know I'm really going through it.

[ellisillus]

anybody else uhhh. anybody else. anyone else uhhhhh

[doctorwh0nerd]

yes..... I have OCD.....

[insidestory1]

I think one of the biggest misconceptions about fatigue is that it's just a more extreme version of tiredness. Fatigue and tiredness are not the same thing. The biggest difference between them is that tiredness goes away if you rest, but fatigue doesn't. When you suffer from fatigue, your body keeps draining you even while you're lying down or sleeping. It's like a leak's been opened up somewhere and your energy keeps draining away no matter what you do. All you can do is wait and hope that at some point the flow will stop.

[little-miss-rasputin-pageant]

having chronic pain is just like. ur sitting perfectly still doing nothing meanwhile the space above your head keeps flashing -1hp -1hp -1hp -1hp -1hp -1hp -1hp -1hp -1hp -1hp

[doctorwh0nerd]

[she-is-autiblogging]

the best pain management technique is undeniably prevention.

so... you should probably use your mobility aids before it gets bad, not just after.

just saying.

[doctorwh0nerd]

This, I'm trying to get better at prevention because I cannot currently manage my pain.

[stillfuckingtired]

Brain fog is not an adequate descriptor, actually. Fog can be kinda nice and beautiful and ethereal and refreshing. The thing we’re describing is more like a brain BOG; everything moves slow like you’re wading through water, it’s clunky and heavy and you keep getting stuck in the mud. It’s uncomfortable and inconvenient and everything takes so much effort. You lost a shoe, probably.

[doctorwh0nerd]

Brain BOG is genius and so true