Where’s Whoopsie #20: Snow Wrist

Career lessons for the chronically ill:

  1. Write out your routine in your planner, including basic self-care essentials like physical therapy and tracking water intake and medications, alongside your work deadlines. It’s a nice little shot of dopamine to cross off basic self-care tasks in your planner, and it helps with managing energy levels at work.
  2. But, write all appointments in pencil because life is unpredictable. Sometimes you will, for instance, have to reshuffle an entire week’s predictable routine of physical therapy, actual therapy, meals and the like to attend a beneficial career training. It helps if you can erase to adapt.
  3. If and when you willingly disrupt your usual daily work routine to attend an onsite continuing education training that will likely make you more desirable to positive unpredictabilities such as career advancement in the future, suck it up and ask to take notes on a laptop. Planners can be written out by hand. Course notes cannot. DO NOT try to take notes by hand with a pen for two hours. It can – and will – destroy your wrists.
  4. If you ignore the advice in #3 above, at least do not further compound the problem by then attempting to write a full blog post within 48 hours of failing at the above.

I am guilty of #3 this week, and my wrists and hands are screaming at me for it. I will attempt to take my own advice and not also be guilty of #4. Full blog posts will resume as soon as my joints have forgiven me for thinking I could still take hand-written notes this far along in a progressive diagnosis. I couldn’t take notes by hand even back when I was still in undergrad. I don’t know why I forgot that fact during professional training this week?

In the meantime, have a picture of Ehlers-Danlos Syndrome. It is, after all, the reason (alongside Rejection Sensitive Dysphoria and a bully-in-my-brain that still feels toxic shame over asking for accommodations like using a computer instead of just taking hand-written notes like everyone else. The Evil Queen has nothing on the bully in my own brain.) I should have just said I can’t handle hand-written note taking, even if the training did take place over a “working lunch” and most people were capable of balancing food in one hand and a notebook and pen in the other. I didn’t. Because toxic shame sucks…

See you all when I’m finished paying for that lack of self-advocacy. (The artwork, for anyone wondering, was created before the aforementioned overdoing it.)

EDS_WheresWhoopsie - Copy
<Image> The Evil Queen staring into her magic mirror. Magic mirror asks her whether she means the age a body looks or the age a body feels when she says “fairest,” as that distinction will affect its answer. In the second panel, a zebra’s ears are burning. The zebra wonders if it means someone is thinking about them or if it’s just a new symptom. <Image Text>: Ehlers-Danlos Syndrome: when your skin is as fair as Snow White, but the pain turns you into Grumpy Dwarf!

Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.

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Improv #15: Twitterpated

*Knock knock*

“Who’s there”

“Hashtag”

“#who?”

“#whoknewTwitterwasoccassionallyuseful? Not me, at least not until today…”

I do not take the full – or even the half – advantage of social media that a blogger is supposed to, so I can’t actually add my contribution to the #AbledsAreWeird Twitterstorm on Twitter itself. I can say I have been laughing myself silly over that hashtag today. For any spoonie who hasn’t seen it, I highly advise you to check it out when you need a break from the world today.

Since I am not twitterpated by the idea of adding yet another form of social media for my poor ADHD brain to have to manage in general, I’ll add the contribution I would have tweeted if I bothered to maintain a Twitter presence for my blog here instead. (But, though I’m only posting here, seriously go check out the actual hashtag on Twitter too!) I will, though, at least conform to Twitter rules and keep my contribution to 280 characters:

Improv actor share:”Doc 1st thought symptoms were chronic, but thank God my infection was acute. How could I live w/pain forever? Life wouldn’t be worth living!”
Lav(next up w/visible cane):”I guess my share is I’m chronically ill & life is worth living? Kthanxbai”#AbledsAreWeird

Yes, that’s a true story, and from very recently. No, I have no idea what, if anything, I should do about it. The person who made the comment was just a student in a class with me. That class is now over. In principle, I won’t see them again? (I mean, it’s not like I’m going to choose to perform in an indie troupe with someone who’d speak like that when I’d previously shared that I occasionally require accommodations for the physical parts of improv because of my chronic illnesses and they still thought that was an appropriate way to phrase a weekly highlight…)

But, the instructor, who is a regular and very serious theater performer, also did not seem to get that there was anything amiss about that comment. This speaks to the broader complete cluelessness about spoonie sensitivity that the hashtag also makes apparent. There’s clearly a need for more awareness among the theater crowd about a) why a spoonie’s life is worth living, even with their chronic illnesses and b) why if an abled performer doesn’t happen to agree, they should still keep their big fat mouths shut about it since at least 1 in 4 of their audience members will also be living with some form of chronic physical or mental illness.

The theater has been encouraging “tough conversations” around diversity and women’s issues in the theater recently. So, it seems like it might be an appropriate time to point out that many performers – and audience members – are also members part of the largest minority group in America. It is just as critical to have “tough conversations” around how to speak about disability as it is to discuss how to speak about race, class, culture, religion and sexual orientation. I am getting really sick of even so-called Progressives managing to include just about every possible form of inclusiveness except disability in their sensitivity training. I’m also not really high enough up in the theater to know where to start to change the narrative, unfortunately…

Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.

Crushing it

Things that went through my mind in the process of composing this week’s blog post:

  1. To Partner: “We need more of those crushable baking potato chips that are not potato chips…”
  2. Hey, there is an entire site devoted to logging prior weather in the U.S.! Someone anticipated the deep-seated need of the ADHD community for a site to fact check them when they write, “Even though it seems hard to believe when we hit the 70s this week, we were in the 20s just last week” and they can’t perceive time well enough to remember if it really was “just last week” – or only felt like it.
  3. Good. My Partner added bread crumbs to our order.
  4. That historical weather site was probably intended for historical fiction. Solipsism is great in theory, but the idea that my mind shapes all of reality falls apart immediately upon being reminded that there is (still) no site to determine the actual word I am looking for from the random descriptions of my ADHD/brain-fogged mind. If the Internet were built around me, there would be. Ipso facto, my mind is not the only one that exists.
  5. To Partner: “You are right that if we order bread crumbs instead of making them, then they are not ‘crushable’ but ‘already crushed.’ Isn’t tense relative to the frame of reference though? By the frame of reference of the bread crumbs, the description is ‘already crushed.’ Potato chips don’t come pre-crushed. So, didn’t I use the correct tense for their frame of reference?”
  6. The moment an AI can obtain ‘bread crumbs’ from ‘crushable baking potato chips that are not potato chips’ – regardless of tense – is probably the moment we achieve the Singularity.
  7. This list of random thoughts is about to be longer than the rest of the blog post.
  8. This is also why my Partner and I crush games like Taboo and Heads Up. Maybe I should just go with that and make this post about how effective communication in relationships becomes even more convoluted with brain fog?
  9. I should still explain why I was originally looking up the weather last week to fact check myself, even though it seems kind of anti-climactic now to state that chronic illness and ADHD can lead to word-finding difficulties when I’ve clearly shown it.
  10. Wait, my original example works just as well as an example of effective communication with chronic illness! I can just relay the original conversation from last week’s cold snap that was intended to become a polished blog post verbatim! Crushing it.

Continue reading “Crushing it”

Trust in Mental Health Treatment #5/Where’s Whoopsie #19: Ire of the Storm

The reason I am awake at 4am is below. It is also, apparently, in the papers (or, at least, the digital online copies of the “papers” since it’s 2019 and I don’t remember what any dead-tree paper looks like outside of my intimidating sketchbook…)

I’ve been noticing an uptick recently in the number of media reports of horrible things happening in psychiatric inpatient facilities and other state-funded “care” facilities of various types. There probably hasn’t really been an uptick in the number of them happening, just an uptick in the number of them that I’m immediately aware of given that I now follow a number of blogs that share such things. Sadly, many of these blogs have shared them because the blogger was/is a patient of one of the facilities involved in the scandal, and they aren’t surprised by it. Or, the blogger has shared a personal story of a recent experience at the hands of the system to draw awareness to how even facilities that aren’t in the papers can still act humiliating and degrading towards their clients. These bloggers are trying to create awareness of the full range of mistreatment that occurs at such places via their own past and present experiences. To these bloggers, I’m very sorry for what you’ve experienced and very proud of you all for speaking up, often non-anonymously.

Continue reading “Trust in Mental Health Treatment #5/Where’s Whoopsie #19: Ire of the Storm”

Cohen Events

*Knock knock*

“Who’s there?”

“Orange.”

“Orange who?”

“Orange you glad Trump might finally be impeached as dictator of this Banana Republic?”

I’m berry sorry, everyone. My joke might be a bit green still, but here’s hoping the currant hints of corruption while in office from Cohen’s testimony do eventually ripen and bear fruit. Trump is definitely rotten to the core.

And on that grape thought….sweet dreams everybody! 😉

 

Improv #14: Sing the Moment

*Knock knock*

“Who’s there?”

“The Perfect Moment”

….

….

“The Perfect Moment who?”

“It’s too late. You already missed it.”

I could use this post to say something vaguely motivational like “feel the fear and do it away” or that it’s possible to “seize the day,” even with chronic physical or mental health challenges. I could use this post to talk about FOMO or the crash that occurs when the future calls in a lien on the present in payment for spoons borrowed against it. I could do any of those things, but I won’t. I may be the only guru I trust, but I only (mostly?) trust myself because I don’t attempt to say the kinds of motivational stuff even I can’t listen to without rolling my eyes. I still prefer snark over spirituality.

Also, I know that I couldn’t back those topics up if I tried. I mean, how could I plausibly talk about seizing a moment when I have no idea what a moment even feels like?

Did I ever mention that researchers out there have amassed evidence that, at heart, ADHD is a neurologic deficit in time perception? Our sense of time is non-neurotypical, to say the least, and totally gone at worst.

Continue reading “Improv #14: Sing the Moment”

Where’s Whoopsie #18/Subway Sociology #5: Mixed Martial Arts

First, for those wondering. The bad news is that I don’t have a new job quite yet. The good news is that that is because the interview process keeps getting longer each time I go through it. I’m not finished with it yet, but I’m also not out of the running yet, either. There are more stages than I expected. I’ll be making that longer commute at least one more time before I can determine if I’ll be making it permanent.

I’ll use that “at least one more time” as a chance to gather more data for my current hypothesis that one particular section of the subway line that I would need to take as part of that new commute truly has a higher likelihood of entertainment value than the earlier sections of the same line that I used to take daily. I find that, including this post, I have now written about the actions of my fellow passengers – and/or other ads and experienced events – five(!) times. These points of data make a beautiful line (bonus points if you are now singing that song along with me), and, for a would-be daily rider who is also a data analyst, a beautiful new series for my blog. I’m retroactively subtitling the previous four posts about commuting “Subway Sociology” entries #1#2, #3 and #4.

One hypothesis is that this more-northerly-than-I-previously-commuted section of the line just has more interesting passengers in general. The null hypothesis, in turn, is instead that I have just needed more distraction from my own brain while riding this particular section of the subway – and thus have been more inclined to notice the fascinating actions of my fellow passengers while riding the rails – than while making other trips. I’ll need more data to truly determine, but, either way, my fifth unofficial/first official foray into subway sociology was a welcome distraction during what would otherwise have been a solid hour for the bully-in-my-brain to psych me out before my last interview.

It takes a lot of confidence to do anything other than stick headphones in your ear and avoid eye contact with fellow passengers on a subway. It takes a unique level of confidence to do double duty during your commute and incorporate your daily workout into it as well. Yet, one of my fellow passengers on the way to my last interview had the brass balls – er, brass bars – to do just that.

Continue reading “Where’s Whoopsie #18/Subway Sociology #5: Mixed Martial Arts”

Improv #13/Subway Sociology #4: Party Poppers

*Knock knock*

“Who’s There?”

“Wobbly”

“Wobbly who?”

“Wobbly out in this weather when I know I will fall over? I’m very dedicated to my art, ok? Now offer me a seat on this train before it’s you I fall onto…”

Amtrak preemptively canceled some Acela routes and other regional commuter routes in advance of the snow this weekend. City transit authorities are posting their standard “expect delays on above-ground routes.” In addition to keeping us abreast of their plans to keep us safe – albeit possibly not on time – during the winter weather, both agencies also seem to be touting themselves as the solution to all the city’s partying needs lately.

On the way to Improv today, I saw ads introducing several bus and train operators who “skip the party, so you don’t have to.” I’m guessing several other class members also noticed the recent uptick in public transit emphasis on how their employees ensure we can have a good time by working while everyone else is playing. “Partying” was a prominent theme in our montages today.

There’s nothing more thematically appropriate for that inevitable first time I sublux something on stage and fall over than during a scene in which the administration of a “party school” with a name one letter off of the Ivy League discuss how to improve their image. This was a class, not a live show, so people stopped scene work and asked about me. I almost wished it had been a public show, though, as I doubt I will ever again get such a gift of a scene to play off a sublux and associated fall as “intentional” than during that one.

With a class, it’s…well…as awkward to bring up EDS in advance as it is to sublux something on stage. I’m in the dual position of both performing in indie shows with a troupe, but also simultaneously being a student. I have to actually graduate from the theater’s comedy school if I ever want to audition for anything solo, and graduating to each next level requires not just an instructor thinking I am ready in my performance capabilities, but also having missed no more than two classes out of any session. The Crisis of 2018 ensured that I wasn’t in the position to even contemplate that kind of attendance commitment for the past two sessions, so I never even bothered to register. I also fainted just before the first class of this current session and thus missed its very first class. So, no guarantees I will make the attendance requirement this time around either. My indie troupe – who are all now graduates – didn’t drop me when I got behind last year. I could conceivably have had my first onstage sublux happen during a real performance, with a team who have been warned in advance to just keep going and use the exquisite thematic timing to heighten, heighten, heighten.

But, as with last week’s hair appointment, I don’t typically get that lucky when introducing my diagnoses to new people. Explaining how I occasionally fall over – and to just give me a minute to see if I can reorient my own joints before treating it like a big deal – is still just…awkward. I never know how to respond to the sort of excessive solicitousness that people offer immediately after they first see me faint or pop a joint.

Continue reading “Improv #13/Subway Sociology #4: Party Poppers”

You’ve Been Catfooded!

Don't you love when your dog looks at you like that? Or your cat? Little shits! I am your master, I am here to serve you...
Image: Two cats sitting on a sleeping human in bed. One cat is shaking the human awake with its paw. The cat tells the other cat, “the food is good, but the service is slow…”

Did I ever mention that my Partner and I are weird people? Like “gallows humor” and “eat anything on the planet at least once” weird? Or that we’re advocates for social justice? If not, you have officially been warned.

I may have mentioned before about how my kitty has PTSD from being abused, starved and abandoned before we got her. I don’t think I’ve ever mentioned that she also has kidney issues, old injuries that limit her mobility, and even more allergies than I do. If the abandonment anxiety alone wasn’t enough to prove she is my spirit animal, then the rest ought to guarantee it.

We suspect that her complicated medical issues might, unfortunately, have been the reason she was ultimately abused and abandoned. I mean, we’ve seen it done to vulnerable humans. It’s not much of a stretch of the imagination to assume it happens even more frequently to vulnerable kitties.

We didn’t know about her issues when I first started fostering her. I was just told to shove as much food and liquid into her as possible. She was too sick to eat, so anything I could tempt her with was automatically approved. I fell back onto gold-standard kitty addictions: tuna water and Fancy Feast. She ate both with gusto, and my Partner and I both quickly realized never to combine cheap cat food and smelly tuna in her tummy again. Let’s just say what she produced was thick enough to mortar a bunker and lethal enough to weaponize to use to clear out the bad guys holed up in that bunker at the same time. She put my two-ply lullaby to shame.

Nothing says a “third date” like an emergency trip to the grocery store to buy every possible form of air freshener in the aisle at nearly midnight. I say she’s “our” foster failure. And, in her mind, she is. She met both of us on the same day. But, technically my Partner and I hadn’t even DTR’ed at the time I got her, and her adoption papers are under my name alone. She’s “our” cat in hindsight, but, at that time, I think my Partner really showed his character by helping clean up after her when he had no official responsibility towards her, or me. I don’t regret it. That experience didn’t require half the strength that actually marrying me and handling my caregiving responsibilities demand. Heck, by the standards of my life it was humorous. It even had an actual resolution, which is particularly unusual in my life. One veterinary specialist, some kitty Prozac, and a lifetime commitment to buying her expensive allergen-safe cat food later, and her tummy troubles cleared up. (However, if her special food ever goes off the market, please send gas masks. We’ll need them.)

That experience has become a running joke for the trajectory of our relationship – and spawned another running joke that our kitty eats better than we do. How many people can read right on the can that their pet’s food is safe for human consumption?

We also watch a lot of Food Network, and while we were dating my Partner dared me to make him a meal that “highlighted” her wet and dry food in the same dish, Chopped-style. If I could successfully fool him into going back for seconds, he’d fork over for a Michelin 3-star restaurant willingly. I never quite remembered to do it when he’d remind me. We’re now married, so any gourmet meal would be funded out of pooled money anyway now. But, the challenge has always stood. And, I’ve always had on my mental bucket list – at least I have every 6-9 months or so when something reminds me of it – to undertake it anyway.

Continue reading “You’ve Been Catfooded!”