Where’s Whoopsie #14: Where’s it Hurt?

Traveling and being unwilling to bring anything I have actually invested time and effort in with me to Hell means I haven’t posted a Where’s Whoopsie since July! I suppose I could have posted some of my decidedly not-safe-for-work swear word drawings that I relied upon instead of geometric patterns to express my feelings during my time in the 9th Circle of Hell, but even I don’t care to see them, though swearing out loud feels like a great way of reminding myself I’m not in that place anymore. I’m fairly confident some of those swear words leaked into my blog posts anyway over the past few months.

However, I feel like posting something just because I need to mentally distract myself, and typing hurts physically even if it might help mentally. Thus, I’m using the fall back of pretty pictures to make up for a decidedly lackluster pain-fogged blog post. Something appears to be going “around,” and proximity to sick people has resulted in the inevitable acute illness coupled with massive amounts of all-over pain. I would dearly love to understand how bacteria and/or viruses exacerbate joint problems caused by defects in collagen, but they certainly seem to. Acute illness seems to have triggered a truly agonizing all-over EDS joint-pain flare. I’m exhausted but on my second night of painsomnia. The next time someone compares their cold to my chronic illness, I’m going to remind them that we get all the same bugs, then have to deal with another week of our normal symptoms being on overdrive to top it off.

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Blog Awards Series #5: B is for Blog Awards

I am not saying “B is for Bedbugs,” because supposedly things are “happening” with that. The home is hiring a new exterminator to come tomorrow and – again supposedly – is going to deal with the code violations that resulted in the scary green notice. I’m not sure how much faith I have in either of these things, but there’s not much I can actively do until I’ve given them a chance to fail all on their own.

Having learned entirely too much about what to do to keep bedbugs out even before an exterminator comes by when a complex I lived in during graduate school got them – and finding the agency rather lackadaisical about learning from my lived experience – I’ll share it with you all. Food-grade diatomaceous earth lining the walls and furniture is a great way to stop bed bugs and other nasties from getting in if the neighbors have an infestation. It’s also a cheap and surprisingly effective after-care product once the exterminator does treat. I did my research as soon as I discovered my neighbors had them, bought that, and was the only person in a ten-unit apartment that didn’t get bedbugs back in the day.  I don’t think it was strictly allowed by my lease to do my own treatments, but at the time management didn’t care since it worked.

There’s no point in putting it down in my sibling’s room until the infestation is handled with entomological nukes first, but I keep hoping the agency will at least allow me to do the same after-care measures for my sibling’s room later. I’m not quite daring enough to just do them anyway as I did in grad school, because I’ve seen agencies use any technicality to boot someone, they barely wanted someone with a trauma history to begin with, and there aren’t really any other openings.

So instead B is for Blog Awards like C is for Cookie. If I have an enforced sit-on-my-hands week, I probably should get back to that “mental health sabbatical” portion of my not-FMLA. I’m hoping to do some baking. Baking too often seems incredibly overwhelming and not worth the spoons when the world is falling apart. But, I’ve always deeply enjoyed it when I can manage it. My original “balanced scorecard” included playing with inventing recipes as a thing that made me feel more like me.

Today’s other balanced scorecard questions are courtesy of Fibronacci:

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Déjà Voodoo

Update: I also posted this in the comments, but then I remembered that smarter folks than I often skip the comments. The author of the original blog post that inspired this one contacted me. She has taken it down and apologized. She also seemed like she was still beating herself up over it even after I accepted that apology, so I want to state openly that she doesn’t need to. In talking to her, I’m reminded again that being non-neurotypical so often means communicating is terrifying and awkward and hard. It definitely still is for me, especially in person. We all make mistakes. We all struggle with what we mean to say not ending up being what we actually say. Character is in how we respond to our mistakes, and she showed she had character by caring when her post so severely triggered me. If (when – I have ADHD after all!) I ever upset someone with my writing, I hope my readers will tell me so I can have the chance to apologize, too.

That is something that none of the other déjà voodoo writers I have ever contacted about internal stigma – including Dysautonomia International, who puts that kind of stuff on main public pages – have ever done. I think it was very brave of her. I’m leaving this post up because I’ve seen a lot more than just one déjà voodoo post out there, and, to date, only one person has said: “I’m sorry.” There are a lot of folks who still need to see this post.

But, the author of the post that originally inspired this one is no longer counted as one of those people in my book. I genuinely wish her the best in her blogging tenure, and I hope others will too. Being non-neurotypical is rough. We both know it. It’s important to call out internal stigma, but it’s equally important that we forgive mistakes within a community of people for whom just communicating at all is often fraught with fear and memories of years of failed attempts. Point out mistakes, then welcome their makers back into the community with open arms immediately as soon as they make a genuine attempt to correct them. If we continue ostracizing our own internally long after they have apologized, then we risk becoming abusers in yet another way. We risk becoming those emotional abusers who keep torturing people for their “mistakes” years later without ever giving them a way to move on. I’ve also been on the receiving end of that type of abuse, and I don’t wish it on anyone who cares enough reach out to me.

Do you ever experience blog post déjà voodoo? You know, where you’d think you’ve written about a topic so many times by now that you could cease having to keep writing about it? Where you’d think you could finally put a pin in it? Yet, somehow, the thing that upsets you so much just keeps creeping up, zombie-like, such that you can’t let it rest?

I owe my subconscious an apology. I mocked it a few days ago for being so far up on its soapbox that it wrote an entire novel in my dreams about the need for internal unity among those of us with chronic physical, mental or developmental disabilities. I laughed because I’d written multiple blog posts on the topic already, and shouldn’t that be enough?

I should have understood that my chronically traumatized brain is so obsessed with the topic because it knows firsthand from too many years of experience what my heart doesn’t quite know how to accept: people don’t change. People will always seek to protect themselves first by selling others out. Or, at least most will. So, I’ll probably be writing about why that doesn’t work and desperately trying to appeal to the better angels of the blogger community for the rest of my blogging days.

I read another déjà voodoo blog post just now. This time it wasn’t dysautonomia vs. anxiety or PTSD vs. “true” mental illness. In this one, the author felt that the only way to express how life-altering it is to have ASD was to compare it to how life-altering it isn’t to have ADHD. The only way to gain acceptance for one type of neurodiversity was at the expense of another. The author stated their opinion that ADHD – while technically a form of neurodiversity – barely qualified for the category because it was simply an “accessory” diagnosis that could be “practically nullified” by treatment. (Yes, those were their chosen words.)

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Improv #10: Seven Things for Self-Care

*Knock knock*

“Who’s there?”

“Seven”

“Seven Who?”

“Seven Eleven…”

“Dude, you can’t fool me. I know there’s only seven of you. When I’m seeing eleven then maybe I’ll believe I’m as think as my friends drunk I am. Now bring me my black coffee and tylenol delivery stat!”

There’s an Improv game called Five Things that seems to be fairly universal. The basic gist is that you sing a little song and then ask the person next to you on the spot to come up with five (or seven, or eleven or whatever arbitrary number) of a certain category. It’s a warm-up game to get you thinking in odd ways.

It’s also a song that will lodge itself into your brain forever. If you don’t believe me, watch here. You get bonus points if you stay on beat and/or come up with wittier or more advanced versions for your answers. For instance, to start you might ask for five types of vegetables and only be able to think of “potatoes, carrots, peas, turnips, and celery.” Later on, you might get a little more inventive: “Mr. Potatohead, Veggie Tales, Carrot Top, The Jolly Green Giant and Sweet Pea.”

I do not seem to have self-care lodged in my brain in the same way. Between the double-vision fiasco, being mentally frozen in the 9th Circle of Hell and general ADHDness, I have been kind of terrible about my self-care this past month. (Don’t worry! No real alcohol or mind-altering substances were involved in my lack of self-care. Line games are just things that have also become permanently lodged my brain.)

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Eye Rate

Ehlers-Danlos is a systemic disorder. That clearly means it can affect any part of our body that either has collagen or relies on collagen. This is rather unfortunate, given that about 30% of the raw protein content in our bodies is made up of collagen. Collagen is in everything: our stomachs, our skin, our ligaments, our muscles, our blood vessels, and even in our hair. While I don’t think this quite means we can literally say our hair hurts, it does seem to mean we can literally tear our hair out over it. I somehow manage to both grow ridiculously thick hair and lose so much of it that my Partner claims he could build another me from what gets stuck in our drain catcher. Others lose as much as I do, but without the thickness to begin with. They get to deal with visible hair loss as a result.

Another place that collagen is found is in the eyes. My family’s genetically atrocious vision and need for prism in our glasses are quite likely manifestations of EDS. I learned this the hard way this week.

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Behind the Back Behavior

I feel betrayed. I’ve just learned for the first time about some truly “behind the back” behavior. I don’t mean anything from the 9th Circle of Hell, workplace bullying or even America’s President being a traitor – those are all sufficiently terrifying betrayals, but they are hardly newly discovered  – but rather something that has been quietly happening for years of which I’ve just become aware. Women, we’re all being badly betrayed…

By women’s clothing.

I’ve had to wear entirely too many dresses lately. Dresses are frustrating to begin with for spoonies, because they require things like making sure your legs are shaved every day, finding flat-toed shoes that look professional and cute (I do not have the ankle stability to wear heels), the ridiculousness and expense that is “dry cleaning,” inconsistent sizing between brands that make shopping take forever and fray the last ADHD nerve, having to buy special bras to wear with oddly shaped clothing styles, and sometimes wearing the modern-day torture device known as the “thong” under them.

They also all have zippers in the back. This has never phased me, but apparently only because I’m a mutant.

I finally pursued physical therapy for Ehlers-Danlos Syndrome because it seems like, if I’m going to have to be on unpaid not-FMLA leave wearing traitorous dresses to traitorous meetings in the 9th Circle of Hell, I should also actually invest some energy into learning how not to dislocate my elbows or fall over because my ankle suddenly decides it needed to pop out orthogonally to my leg while I do so.

It took months to find a physical therapist who actually knows about EDS and who accepts my insurance. When I finally found one, the first thing he did was go through what “normal” range of motion is for most of my joints and to establish some limits beyond which I really shouldn’t be moving them to ensure my funny bone stays connected to the rest of my bones.  He will work with me throughout my not-FMLA, including designing a home program I can continue anywhere, including in the 9th Circle of Hell.

It took me until after the session to crystalize what was nagging at me about my “hyperextended” range of motion behind my back. If what I am capable of is “too much,” then how do non-mutant women ever zip up their dresses?!

I have never met a dress I couldn’t zip on my own, which is a good thing because my Partner is the first human I’ve been able to live with. I finagled my way into a single room in my sophomore year of college, and I never looked back. I am not good at having strangers in my personal living space. (Heck, it even took about four months to get used to living with my Partner.) In all that time, I have worn dresses to various functions. Now, suddenly, I’m told that the way I zip them is actually hyperextending most of my arm joints. What’s the alternative? For now, it’s asking my Partner to zip me up.

He is more than willing. (Though being a funny bonehead himself, he happily reminded me that he only has to own a handful of sports jackets, five pairs of similarly colored dress slacks, two colors of dress shoes and two suits to complete the male professional wardrobe as he agreed.) But, it made me wonder how single women without Ehlers-Danlos Syndrome handle zippers in the back of their dresses? If I’m understanding my physical therapist – and my Partner – correctly, most humans can’t zip up a zipper that extends the entire length of a dress from butt to neck on their own? I legitimately never knew this.

A brief internet search suggests this to be true. There are even devices made for single women to help them zip up their own dresses? Women, why do we stand for this? Women’s fashion is cruel and unusual punishment in so many ways, but it’s a special level of betrayal that a staple of women’s fashion for “coupley” events like weddings and first dates requires expensive contraptions for a single woman to put on. Or, that a woman could conceivably make the C-suite all by herself but still need to ask her significant other to help her get dressed for it in the morning?

There are other places that designers could put zippers. I’ve seen dresses with zippers up the side or no zippers at all. Yet, the vast majority of my dresses have had zippers straight up the back that require a range of motion that is “beyond normal” for humans. Why are women such masochists for “fashion”?  Can we all agree now that owning a twenty-piece professional wardrobe like my Partner makes much more financial and physical sense, especially for spoonie women? Can we agree to some women’s code wherein we all don’t purchase clothing that requires special equipment to put on?

I’ve been intrigued by the idea of a minimalist wardrobe for some time, but “minimalism” for women still requires being creative so that the same small number of clothing items are worn in continuously inventive ways that look like they are many more items. That takes creative commitment for which I don’t have the mental energy. Owning fewer clothing items additionally means more of that most feared task for anyone with ADHD: laundry. Laundry is the bane of the ADHD existence. I can’t quite embrace minimalism simply because of its laundry commitment. However, I am now seriously considering boycotting dresses with zippers up the back. I trust my Partner to always be there to give me a “hand up,” but I resent that some designer I’ve never met could force me into a situation wherein I have to either spend additional money or rely on others. I’m not scratching their backs with any more of my money unless they scratch my back and make their clothes fit within my new “pretending not to be a mutant” human lifestyle.

Where’s Whoopsie #13: I am the 1 in 5

Happy Fourth of July from one of the 1 in 5. Which 1 in 5? Well, probably not the one you are immediately thinking. Yes, I am one of the 1 in 5 Americans who experience mental illness in a given year. I’m also one of the almost 1 in 3 Americans living with multiple chronic conditions (and one of the 30 million of us living with five or more diagnoses!). However, I’m talking today about being one of the 1 in 5 Americans who have gone to a protest since 2016.

Our country was founded on ideas of Life, Liberty and the Pursuit of Happiness. Those are being denied to too many of our countrymen, including members of my own family. I believe it is patriotic to hold our leaders accountable for being the country we claim to be. My advocacy has taken place in intimate courtrooms and on huge street corners. Because I am, however, also one of those other 1 in 5s and one 1 in 3s, protesting isn’t always the most straightforward thing. Thus, this Fourth of July, I thought I’d post about how I have pulled off attending protests with ADHD, C-PTSD, social anxiety, depression, migraines, dysautonomia, Ehlers-Danlos Syndrome, IBS and just the general B.S. that – while they aren’t evil incarnate like the Republican leaders willingly setting Americans up for injury or death by dismantling our social safety net – even the well-intentioned Progressives who arrange protests are still often so very clueless about how to make protests inclusive for differently abled Americans.

Thus, I present Lavender’s Fourth of July Guide to Protesting as a Spoonie

Continue reading “Where’s Whoopsie #13: I am the 1 in 5”

Where’s Whoopsie #11/Improv #7: Potty Mouth

What can I say? It’s been a bit of a $h177y week. Trauma guilt (see comments on that post if you want to hear about the new turd that dropped this week) is a dirty job. Dirty jobs call for Dirty Jobs.

I’ve been watching a lot of reality t.v. this week because that’s where my brain is at. I have been gravitating towards things that are less about people – because eff people – and more about the situations they are in: Naked and Afraid (survival skills), Deadliest Catch (crab fishing) and Dirty Jobs (hopefully self-explanatory.)

I just learned from the Discovery Channel’s Dirty Jobs that, in the historical Middle East, bedouins would consume fresh camel dung as a treatment for dysentery. Apparently, it was kind of like an old-school fecal transplant: top up the substandard human gut bacteria with some powerhouse camel bacteria and kick dysentery’s @$$ before it kicks your own. (Note: this only works with fresh camel dung. Using the older stuff just leads to more problems!)

I buy the concept. I do have to wonder who in history, however, first came up with that idea in the era before you could test such things in a sterile lab environment without any actual consuming required. Who was that human who first looked at the wrong end of a camel and asked, “I wonder what will happen if I eat the things that came out of this animal’s butt? Oh, hey! Maybe it will make things no longer come out of my butt!” This feels like it should have become a cautionary tale for a girl who claims to be down to try anything once that there is sometimes such a thing as being too adventurous.

That said, our assignment for Improv class this week is to be incredibly mindful of how we do everyday activities. Like, how we don’t grab a wine glass with a fist like a cup. We don’t even truly grab our cup like we often pantomime that we grab our “cup.” We actually flip our hand upside down and hold a wine glass underneath the wide part of the glass. We do ham-fist our mugs, however. It’s the little details like these distinctions in object work in Improv that really distinguish the professionals from the amateurs. Realistic pantomime is so much more believable than sloppy pantomime. Immersion is so much more fun for an audience than constantly breaking the Fourth Wall. Our assignment is thus to slow down and really pay attention to how we do the things we do each day. Mindfulness: it’s not just for trauma drama anymore.

Given that it is also IBS Awareness Month and I have already once legitimately performed in a scene wherein I was acting as someone straining on the toilet* for most of the scene, I have to wonder how far I should take the method acting?! Is there ever a point in bathroom humor where the pantomime becomes a little too uncanny valley? I mean 10-25% of us have been there. Probably more of us have if we’re spoonies. Ehlers-Danlos and other disorders come along with gut motility issues as a buy-one-get-one-free.

Is it funnier for an IBS-sufferer audience member to see the pantomime done well? Because on stage, at least, it isn’t them languishing in the compromising situation? Or does it just make it sadder to see it done wrong anyway? An actor doing it wrong implies they don’t have the lived experienced to do it right. It implies that even after the actor completed a specific assignment in which they observed how they completed everyday activities, they still never had the opportunity to “experience” what realistic bathroom distress looks and sounds like? I’ll never know. I have had the recent opportunities to observe the real situation in action. I “pushed” my limits in the name of accuracy on the throne and on the stage…

However, if there is a line for realism in Improv potty humor, I’m pretty sure that it stops somewhere around camel dung as a treatment for dysentery. The fact that I now know that fact might very well show up in one of my Improv scenes someday. We are encouraged to draw inspiration wherever we can. I will not, however, be observing how to pantomime that action realistically.

Happy Saturday everyone. Hoping your week ahead – like your stool – passes quickly and isn’t too hard to handle! In honor of IBS Awareness Month, which has periwinkle as its color, “digest” these three offerings and find the mistakes. There’s a periwinkle-and-brown Where’s Whoopsie for the awareness campaign, and I include two others that have brown and yellow. Because why not? When have I ever quit while I’m “behind”?

*For anyone wondering: the Improv game in which I engaged in some potty-mouth humor was a freeze-type game. Actors waiting in the wings would watch a scene until the on-stage actors naturally contorted into some sort of crazy physical pose, then they would call “Freeze.” They would tag out the actors, assume their poses exactly, and start a brand-new scene starting from whatever those poses suggested. I had been partially squatting and looking angry – about to rush a dude in a bar – at the time freeze was called. The replacement actor went with the other obvious solution for what two folks near to each other, squatting, and looking stressed could be. The new scene with him and me involved him coaching me through a “difficult food baby delivery” like a Lamaze coach. I just had to “go with it” it, as they say…

Heavy Subject Matter (Pt. 2: Physically Heavy)

Warning: heavy material ahead. No, not a content warning. (If you want that, see Pt. 1). Though, I suppose the book has some of that in its characters’ backstory. I literally mean heavy subjects ahead.

For anyone who is super adept at remembering my life:

  1. Why? It’s not that interesting?
  2. Can you please teach me how?

I need a journal to remember what happens to me on a Tuesday. Seriously, there’s a little journal in my Health Storyline app entitled “Things that Happened Today.” I need it.

But, if you do remember my life, you may remember that I was recently diagnosed with EDS. I also wrote about how challenging it is to remember what I read in books. This is unfortunate because I’m having a particularly hard time getting through Oathbringer by Brandon Sanderson. It’s a good book. It’s a good enough book, in fact, that my Partner wanted to read it, too, and he rarely reads fiction books. The fact that he also wanted to read it means that we bought it in hardback. He is weirded out by Kindle books.

We bought it the day it came out. He finished it shortly after that. I’ve been struggling since then. For anyone keeping count, the book came out almost six months ago. Partly, I’ve been struggling because of my brain fog and a need to go back and refresh on sections whenever I set it down for a bit. But, there seems to be something more. It is more than just more than mentally taxing to read that book.

Continue reading “Heavy Subject Matter (Pt. 2: Physically Heavy)”

*Press it* Some days you burn it with fire and some days…

…it burns you with fire instead!

If it isn’t one spoonie nearly burning down her office, it’s the heat from a heating pad causing a rare heat-related burn rash for another spoonie. Life is complicated enough with electric appliances + brain fog. Now there’s another concern about the use of heating pads to be aware of, sigh!

I’ll admit I am re-blogging this without independently verifying the medical information. However, Fibonacci – in addition to being a great writer and painter – is a scientist with journal access like I am. I trust her to do her homework!

via Hidden Dangers of Chronic Heating Pad Use!