It's exhausting and hurtful to have your every action perceived as if you had the worst intentions, even when you're trying your best to do good. It's what forces you to constantly fight to prove yourself, that you do things in good faith, that you're being honest, that you mean well, as if your actions don't already prove it.
And the thing is it never stops, no matter how hard you try to show your true qualities it's never good enough, you always have to try harder and then hear the lies about what you meant by it. It puts you in this magic loop with no escape, you are never understood clearly, you are never free. At one point you too start wondering if they're right, if your intentions are bad. You doubt yourself, you feel guilty for wanting to feel good about yourself.
Anyone doing this to you does not care for you. You don't deserve to be continually misrepresented and to have the value of your actions voided by someone thinking you should have done differently. You should not be brought to exhaustion trying to be good enough for people who do not care if they're being good to you. People who usually do this won't tolerate any bad intention ascribed to their actions, even when it clearly belongs there. They judge you on standards they would never impose on themselves.
My version of the “do it scared” post is: do it scared and don’t wait until you feel absolutely ready or wait until you feel you have the perfect opportunity.
Anxiety usually makes us procrastinate because we fear failure, or because we fear facing certain things that induce anxiety, and it’s a snowball effect. It tells you to do things at the right moment, when you have all figured out, when you have prepared yourself the most, but if you’re a perfectionist like I am, you might be waiting until you can finally execute things perfectly.
Perfection doesn’t exist and doing your best realistically means doing what you can in face of the circumstances in your life, instead pushing yourself to give more than you can. Do it scared, don’t wait until you feel perfectly prepared, don’t try to make whatever project you’re working on perfect either. Whatever you’ve managed to do, be done with it and move on, don’t overdo it. You don’t have to be perfect. You’re enough as you are.
Do it scared. Don’t wait. Do it in a way that’s manageable and respects your needs. Don’t ignore those needs trying to be perfect. You already are capable, you already are good enough. You’re not a failure if you’re not perfect. You are more than capable of doing this. I believe in you.
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Get yourself a fabric store that will light your fabric on fire for you
No but legit I asked what the fiber content of something was and the guy didn’t know so he cut a chunk off and lit it on fire and felt the ashes and was like. Yeah this is mostly cotton with a lil bit of silk. And that was the moment I knew. This is it. This is the fabric store for me. Also that guy is marriage material. Not for me but damn some person is gonna be so happy with him.
If you don't mind me asking, what ARE the right codewords to use on doctors and such?
I’ve thought, many times, about writing a book or something that was basically How To Negotiate Your Disability Without Curling Into A Ball And Weeping More Than Once Or Twice A Week *Or* Murdering The Entire Universe (More Than Once Or Twice A Week).
Here are some highlights:
1) On acquiring adequate pain medication.
Never actually say “I really need strong drugs here doctor, because the drugs you and every other doctor gave me for this injury/illness didn’t work, and also I’ve been in pain for years and I’d like that to stop.”
While there are some doctors who speak human languages and will understand what you’re saying, most, when you say that, will hear:
“I am a ravening junkie werekaiju, and I will come to your house and EAT YOUR BABIES IF YOU DON’T GIVE ME HEROIN.”
You think I’m kidding? Watch a healthcare professional’s eyes when someone else says something like the following. Watch them shut down and back away and tighten up and generally stop treating the person like a human. So what do you say?
Try this:
“Well, I hate these drugs that make me *stupid*, you know? One of these so-called doctors — they gave me some pill that made me feel like I was on a whole separate planet for *years*, but I was still in pain! I have things to *do*, doctor. I have a job/family/projects. I wouldn’t be here if I could get my work done the way I am now, but if I can’t do them with the drugs you give me, then what’s the point?”
Make sure to translate this into the appropriate dialect for your area, but note the important points:
a) Reassures the doctor that you’re not one of those ~*eeevil*~ junkies.b) Reassures the doctor that you’re not one of those ~*eeevil*~ non-productive members of society.
c) Reassures the doctor that you’re not one of those ~*eeevil*~ weak-willed disabled people.
Remember not to use too *much* *correct* medical jargon — they get suspicious about that.
Yes, all of this is necessary a *lot* of the time.
With the above code, 95% of the time the doctors begin *cooing* at me and treating me like *royalty* — and *100%* of the time I have gotten the effective medication.
Pro-tip: If you can add a true (or true-sounding) story about how much you *hate* one *particular* opiate (“Percocet is useless! All it does is make me stupid!”), then you’re probably in the bag.
2) Acquiring mobility devices.
Never actually say “I need a walker/wheelchair/scooter, because I have trouble getting around, and also I have a great deal of fatigue and pain when I try to do so.”
While some healthcare professionals speak human languages and have souls… well. A lot of them? Will hear this:
“I am a fat, lazy, Fatty McFatFat, and I will continue to expand, much like the universe, until I am a drain on the resources of this great nation and a proof that you, doctor, are a failure. I will never use the mobility devices, ever, and they will gather dust in my home — a mockery of everything you, Morally Healthy Person, holds dear.”
Yes, I know this makes even less sense than the former, but I’ve interrogated these people — the ones who have still have partially-functional souls and minds — and this really is how it works in their adorable little pinheads.
They really do think we’re asking for these devices for… no reason at all.
Or, as my otherwise sane GP put it, she has an honest fear that people like us will take one look at our new mobility devices and throw all caution — and sense — to the winds. That we’ll stop stretching and exercising. That those of us who *can* walk for short distances will — somehow! — decide to *never walk again*. That we’ll decide to — gleefully! cheerfully! blithely! — let every last one of the muscles we’ve been clinging to with our *fingernails* *atrophy* to *nothing*, because…
Because they think we’re idiots, that’s why. So, try this instead:
“I have a lot of pain and fatigue when I try to walk for any kind of distance, at all, and that’s getting in the way of my ability to have anything resembling an active life. It’s even hard to get to my doctor’s appointments sometimes! I want to do at least some of my own shopping and other errands, and go out with my friends, and at least try to hold down a job, but unless the weather is really good and I’m having a good day in other ways, it’s just not going to happen. I don’t want to stop using my cane/walker/whatever completely — and I *won’t* unless I *have* to, just like I won’t stop doing my PT and OT exercises — but I need something that will let me actually have a life.” Note the similarities to the pain management code — and yes, do make sure you put this in your own words.
But also make sure you keep everything that makes you sound like the Virtuous Handicapable Person you totally are.
Because that’s necessary.Yes, it is.Yes. It. Is. Just as it will be necessary, in many states — make sure you check — to add in this little number:
“It’s just… well, you know that I don’t really have any bladder or GI issues, doctor, but I still… sometimes… on bad mobility days… you know.”
Here’s where you look down.
“Sometimes I don’t make it… you know. In time.”
Understand that you’ll have to repeat this to, like, four different people. At least.Understand that some of them will make you get specific.
If it helps, pretend you’re Steph Brown, doing her level best to gross the everloving bejeezus out of her P.E. teacher with graphic stories about her period so she can get out of class and fight crime.
*I* certainly found that helpful.
My chronic pain doctor suggested I exercise more
I asked him “how?”
He looked confused. Said I should try a bit every day
I said “not when, how?” I asked what exercises I should do
He suggested half a dozen options that had all been explicitly banned by other doctors. I’m not allowed to run. I’m not allowed to bike. I’m not allowed to use my rowing machine or my punching bag.
I walk my dog whenever I have the energy and when it doesn’t hurt too much
What else can I do?
He told me I should exercise more
And then he changed the subject.
I think the best advice I ever got to stop myself from getting in my head over issues i was having with a partner/friend was “Are you deciding on ultimatums in your relationship without the other persons knowledge or consent? Are you having conversations in your head where the other party is a projection you supply the responses for? If so; you have done this person a huge disservice in not allowing them to answer on their own terms. You have done so much architecture around this problem in your mind that is impenetrable for anyone who was not there when it was being built.”
That shit really changed my life and honestly? I think made me a nicer person to be around.
personally, i only found one recipe in here to try out, but i loved the general tips on cooking to achieve particular colors, tastes, or textures. there’s worksheets for figuring out your aversions that can also be used as communication aids for nonverbal ppl.
recipes all have their colors, tastes, and textures labeled right up top, so you know if it suits your needs right away. the author is autistic and has an extremely nonjudgmental way of writing about picky eating.
Have to keep reminding myself: "You need to put up with this shit because something you want is on the other side of it"
tumblr wisdom, refs, advice, guides this blog exists for me to refer back to |main @kit-kat-kake
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