#and some of that is managing my executive function spoons - i want to be realistic if this thing is actually going to make me happy

[nihilisticlinguistics]

#it feels pointless to try to work on things on good days because i KNOW i'm too sick to do them consistently#but it still feels good to do them on the days i can#i like playing guitar when i have the energy even though i'm too sick to really practice and improve#i like drawing and i should try to do it more even though i know many days i'll be too tired to hold a pencil#it relates to something that i'm pretty sure tumblr user plantpretender talked about a while ago:#lots of the strategies that help overcome executive dysfunction#are the opposite of the strategies you need to manage energy when you're chronically ill#you can't try to harness momentum and push through blocks bc that will make you sicker#and part of the solution i think is approaching it like this post#just do what you can when you can and enjoy it for what it is (tags via @scribefindegil)

IDK who needs to hear this but if there's something in your life that makes you feel better, but you never stick to it,

it's still actually perfectly fine to do it

and you shouldn't stop yourself from starting just because it won't be a permanent change.

Like if starting a new daily planner gives you an amazing afternoon of planning and four days where you feel in charge of your life,

why not do it?

It doesn't matter that it won't be a permanent change - 4 good days is still worth it.

If you ever catch yourself thinking, "I wish I could pray/stretch/prep/plan/do the thing, but I always get started on that and it never lasts more than a couple of days,"

what this really means is, "hey, I can feel better for a couple of days."

if this post is making you think of things in your own life that you wish you could stick to because of how good they make you feel,

just be aware:

you're not thinking of a list of ways you've failed to commit

you're thinking of a list of things that make you happy, and you should give yourself permission to start doing them as often as you want to

[cannabisrefugee-esq]

 Of All The Things I've Lost, I Miss My Mind The Most. Ft. Joker

November 29, 2019

I recently wrote on my Patreon about Dave, my new disability advocate who seemed like he was going to be helpful for once.  Where my previous advocate was good at bleating on endlessly about my alleged “rights” as a disabled person, wasting my time and energy listening to her while not actually helping me gain access to resources, my new advocate put on a seriously impressive show.  Because I don’t have a car and am generally too sick to walk or ride my bike more than a couple of blocks, and likely too sick to drive even if I had a car, he arranged to pick me up for our appointments and afterwards took me back home.

Because I no longer possess executive function and cannot consistently or reliably complete tasks that require it (read: the stuff corporate executives pay other people to do for them, particularly female people, namely secretaries, wives and others) this man filled out applications for me, doing some of them online, addressed and mailed the ones going out of town and hand-delivered the rest.  This was almost unbelievably (!) helpful and I felt cautiously optimistic that things might finally be on the right track: a track towards getting me the disability and need-based benefits I’m entitled to as a seriously ill person with a disabling incurable, progressive disease.

To wit, Social Security benefits, into which I have paid since I started working when I was 15 and which they will just give to me freely if I live long enough but for which I have to beg in order to receive now, and housing, food and cash assistance that will help me stay in my little apartment, run my small business and somewhat control my environment and my access to climate control/lights/running water/refrigeration/toilet etc. and privacy and relative peace in which to care for my 2 adopted shelter cats and manage the daily pain and indignities of my disabling autoimmune disease.

The online application for SSD was returned to me in hardcopy to review, sign and return.  lol.  Along with a notice that if I want to also apply for SSI, the “other” form of disability-based benefits that’s basically exactly the same as SSD and as far as I know requires mostly the same information sent to the same place, I had to do a separate application for that.  lol.  The application for food and cash assistance was “never received” by social services, according to social services, even though Dave hand-delivered it and watched them time/date stamp it himself.  lol.

Dave had also assured me that I was a candidate for vocational rehab, which agency would easily and gladly find me a part-time work-from-home job tailored to my new dis/ability and help me do and keep it, as well as offering me various assistance with my small business including accounting and other administrative support, technical assistance and equipment including a new laptop and other things.  lol.  Most of that seemed unlikely at best but I almost believed it: my hope went from none to about 3.5% — that’s 3-and-a-half percent — because anything higher than that is frankly completely insane and I knew better but I did it anyway.  It was mostly involuntary because that’s the thing with humans innit.  They (we) seem predisposed to hope, against the odds and against all evidence.

When I spoke with someone at voc rehab, she informed me that she had just that very day had to have a “talk” with Dave who apparently keeps making inappropriate referrals and making promises to sick and disabled people that voc rehab simply does not/cannot keep.  They don’t do any of what Dave told wasted an hour of my time and about 3 days worth of spoons telling me about, and what is available is only available to people starting new businesses.  People with existing businesses get nothing.   lol.

As for getting me a coveted “work from home” light-duty position that myself and everyone else and all their relatives also want, and might actually need, they don’t do that at all.  They might be able to help me keep a job I already have but I don’t have one, and there is no realistic way I will ever get one as even the application and interview process is too grueling a task for me now.  Not to mention that I’m too sick to consistently show up and produce quality work anyway because even if a sick person can still produce quality work sometimes when they feel relatively well, chronic illness = unpredictable = unreliable = unhireable.

I put myself through law school with absolutely no help of any kind, took the hardest bar exam in the country if not the world and passed it on the first try, but that — meaning, looking for, applying for and getting jobs, something I could do as a 15 year old and did for 25 years of my life — that I can no longer do.  lol.

I only saw “Joker” once but from what I recall, a bunch of white men and their white male “disability” system made another white man even more crazy than he was before and he killed some of them.  I see absolutely no problem with that.

Today is Thanksgiving in the United States.  I don’t know what this means in other places that also celebrate this holiday at different times, but I know what it means here.  So Happy Celebration of Indigenous People Being Genocided By White Men Day y’all.  Make sure you are sufficiently “grateful” to our male owners/corporate and government overlords for allowing us to just-barely exist (to serve them) until we literally, physically can’t do it anymore or die trying.  This world is fucking crazy man.  It’s absolutely insane.

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