Written on the Prophetic Plates?

This Is Why We Can't Have Nice Things
<Image>: Smug cat on a ledge with a broken vase on the floor. <Text>: This is why we can’t have nice things.

My Partner and I are going to a game night tonight hosted by someone I met through an ADHD support group. So, of course, I had a dream that the hosts kept serving me party food on real plates, and I kept progressively dropping them. I desperately tried to explain, “Please stop giving me nice things. I drop things constantly,” but somehow the china I was handed just kept getting progressively finer…

On the one hand, I hope that doesn’t become a self-fulfilling prophecy. It is wet and slippery out today. I also didn’t sleep well – no thanks to that dream.  And, it would be nice to actually make “friends” with people before I break something (of theirs or of mine) in front of them. On the other hand, if there will ever be a household where, “I know I’m clumsy, but I forgot to put my plate down before my hands got too tired” might actually make for an understandable explanation, perhaps it would be a fellow neurodiverse household?

I’m sure this dream has nothing at all to do with the fact that I read the Ehlers-Danlos Society’s “Mental Health Care Toolbox” on Facebook yesterday or the fact that it noted that people with EDS and HSD have a higher incidence of anxiety, depression, and ADHD. Or the fact that I have fallen down in public places twice recently. Nothing at all…

I'm Not Clumsy. It's Just That The Floor Hates Me, The Tables And Chairs Are Bullie And The Wall Gets In The Way T-Shirt
<Image text>: I’m not clumsy. It’s just the floor hates me, the tables and chairs are bullies, and the wall gets in the way.

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

 

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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”

Striped Girls Can Jump?

Reminds me of a few people I know!!
<Image Text>: “Your flexibility amazes me. How do you get your foot in your mouth and your head up your ass all at the same time?”

People have the strangest reactions to learning about Ehlers-Danlos Syndrome. So, telling them about it when you are already socially awkward quickly becomes a study in ridiculousness. For instance, I got to have that discussion recently with my hair stylist. It ended with me jumping up onto things alongside the majority of the salon staff. I promise there was no alcohol involved. I just would rather do practically anything – including impromptu social experiments – than make “small talk.”

My stylist knows that I have dysautonomia. I hadn’t exactly planned to tell her, as how does one broach that conversation during “small talk” at a salon, but fainting in her doorway last year kind of forced the choice between sharing the diagnosis or paying whatever the deductible would have been for an ambulance ride when the owner was afraid otherwise I’d die on him – or worse sue him. My old office, before my bully-of-a-boss fired everyone in it and made its lone survivor a fully remote worker, used to have a faulty heater. I had to wear a sweater, an undershirt, and a camisole just to keep from turning blue in that office most of the year. In winter, I’d then add a big heavy waterproof coat, scarf, gloves and hat on top of it to walk the about ten minutes from my office to where I get my hair cut. I learned last winter that just because it is 50 degrees inside your office and about 20 degrees outside, some salons will inexplicably choose to keep their facilities at about 80 degrees. If you walk into one of those salons wearing all those layers, you’ll pass out in the doorway from the dramatic temperature change. At that point, the cat’s out of the bag.

Continue reading “Striped Girls Can Jump?”

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.

Continue reading “Eye Rate”

Bombogenetics with a Side of Pie

Cross one random thing off my life’s bucket list. For Pi Day this year, we were gifted with a snowstorm that shut down the city for 36 hours (including leading to the cancelation of an Improv show I would otherwise have been in, boo!). The whole city – at least those in it who had office jobs – got work-from-home days on Pi Day. My partner and I both decided to make pies in honor of the occasion.

I have always wondered why other people could beat egg whites into stiff peaks, but I never could. I have gone my entire life unable to make a meringue, custard, french silk pie, or banana cream pie despite otherwise being a pretty good cook and/or baker. I have tried all the tricks I have read about over the years – chilled metal bowls, tilting the bowl and doing an undulating mixing motion with my beater and/or hand mixer for an optimal mixing motion – and I do mean everything. I once asked a chemical engineer about chemical admixtures and fluid dynamics just to determine if he could help me make a meringue. He could not, but he could make one himself. And, he assured me there really was something to the tilted bowl and optimal mixing stroke thing I had read about from the literature in general. It works for concrete as well as meringues.

Before I got an upgraded diagnosis,* I interpreted my continual meringue “failure” as just that – true failure on my part. I thought it meant I was a lousy baker because aren’t meringues kind of one of the “five mother sauces” of pies? It’s kind of disheartening when RSD shows up in the kitchen. The kitchen should be a failure-free zone, because, as my Partner says, “if you mess up, you can still eat the evidence.” But, no, I blamed myself for my meringue failures anyway. Well, it turns out it was probably an early bit of evidence – along with ankles that kept giving out during soccer leading me to be medically retired, early carpal tunnel and “double jointed” hands that made a no-nonsense Eastern European strings teacher tell me point blank that I should give it up because I couldn’t hold my bow well enough to be any good at it – that I’m hypermobile. I’m medically excused from meringues, too.

But, I’m older and wiser now and I have better kitchen equipment. I’ve learned that it’s okay to ask for accommodations if you have a chronic illness, including in the kitchen. There’s no shame in a little help. My particular unexpected accommodation for my own bomb-o-genetics came this Christmas in the form of a fancy KitchenAid stand mixer given to us by my Partner’s parents. I progressed from a lifetime of failure to, in 2018, both understanding the root cause of my prior failures and being able to make a meringue at literally the touch of a button. (I did have to make my Partner put it in the oven and take it out later. I also randomly drop things sometimes and unset meringue fillings and/or fresh-out-of-the-oven meringues are not something I want to risk dropping!)

I wasn’t a cooking failure after all: just too poor in grad school to afford a stand mixer. With that knowledge, whole worlds of homemade whipped creams, Boston cream pies, and more have opened to me! For now, though, enjoy some pictures of my first ever lemon meringue pie and custard. I also include my Partner’s apple pie as a shout-out to him. They are a little toasty on top, but that is because we didn’t realize our new oven ran to the extra-hot side of 350. I’m still willing to eat the evidence.

 

*What subtype you ask? Well, presumably just hypermobile, but ask me after the genetic test results come back. I have a side of my family that I don’t know a lot about that also raised some flags in the review, so good to rule out anything more serious with a full genetics test. Presumably hypermobile unless I say otherwise in a few weeks. Hope I don’t say otherwise for my sake! Hypermobile is supposedly the least severe subtype, as well as not having a clear genetic marker yet.

Messages in a Bottle #4: Cold Lang Syne

Today’s winter storm event – Winter Storm Liam – is turning out to be a non-event for my area. There are two more potential snowmakers behind it, per my favorite bedtime story,  aka The Weather Channel. Maybe those will live up to the hype that Liam didn’t.

The blizzard we ran into in Iceland in the final installment from my holiday trip was decidedly not a non-event. I assume it was the same bomb cyclone, aka Winter Storm Grayson, that caused our complications as the one that caused problems for most of the U.S. Either way, this entry is dated 1/2/18. Its lessons include a) always scan your important documents into Evernote if you have ADHD, even if you are on vacation, and b) get the winter damage rider on your rental car if you visit Iceland in January. The pic of just sheets of white is a road. If you don’t believe me, look for the road signs as hints. We drove in that.

Continue reading “Messages in a Bottle #4: Cold Lang Syne”

Messages in a Bottle #3: Stoppin’ in a Winter Wonderland

This post was originally dated 12/28/17. It chronicles a stretch of the 54 and the 55 –  unpaved but “real” roads reasonably far off of Iceland’s Ring Road – as well as part of the Ring Road once we finally found our way back onto it heading North from Snæfellsnes to Hvammstangi. It was written from our little cabin at about midnight after we’d gotten in about an hour earlier. For those at home who are keeping score, the sun sets in Iceland in winter at about 4pm. So, we had been driving one-lane dirt roads along a fjord well after dark. The road conditions were “icy” with “blowing snow.” But, they weren’t yet a blizzard. That would happen later in our trip! Thank heavens our little cabin had a self check-in, as checking in with limited check-in hours might have been interesting. If you read my last Iceland post, you learned that the west of Iceland completely shuts down over Christmas and Boxing Day. It does open back up afterward, but there aren’t many restroom break opportunities along even the Ring Road, and many of the N1 stations that claim to be open those days are in towns off the Ring Road – or they close down about 2pm. This makes pit stops complicated. I have no photos of the moonlit fjord or the crazy drive because I’m a chicken, but I include some photos from the next two days at the end.

——

Continue reading “Messages in a Bottle #3: Stoppin’ in a Winter Wonderland”

Where’s Whoopsie #7: Merry Christmas to All and May You All Be Alright!

Twas the Night Before Christmas and in her flat on tenth floor,

Lav claimed indifference to doing her chores.

Compression stockings were hung in the bathroom with care .

Oh, who are we kidding? They showed wear and tear!

The kitty was nestled in laundry unfolded,

Knowing her owner hadn’t the heart to scold her.

And Lav with her blood pressure cuff and glass bottle

Gave up and to the sink for a refill did tottle.

When out in the hallway there arose such alarm

Her partner put hands to front door in case it felt warm!

Then to the peep hole Lavender…well, not quite “dashed.”

Wondering which of her neighbors were being so brash.

Fluorescent lights left the hallway aglow

Making it seem migraine aura explained sights below.

When what to her dazzled eyes should should say “Ho!”

But a hefty old dude and some hooved creatures, yo!

With red ruddy eyes and a belly so puffed

Lavender checked him for stroke and offered her cuff!

More rapid than drums Lav’s heart beat in her chest

But old Nick was quite healthy. He’d pass the tilt test.

Now, DASHER!, now, DANCER! now PRANCER and VIXEN!

On, COMET! on CUPID! on, DONNER and BLITZEN!

Out the floor! Out the hall!

Now, dash away! dash away! dash away all!

As dry heaves we’re hurled – and the dizziness came nigh –

Lav begged a ride. Nick feared she’d faint and fall from the sky!

Now up to the flat top the coursers they flew,

With Lav’s salty snacks – no cookies –  so had to make do!

Her partner checked her over and urged she keep drinking.

He smiled at her “proof,” but thought she was overthinking.

Yet as he tucked her in bed – and begged she settle down –

Back through the window came St. Nick with a bound!

No dirt on him – not wrinkles nor speck of chimney dust.

Modern Santa used dry clean and made no more muss.

He was hip to the WiFi, and he used Google maps.

But losing GPS signal was a load of ho ho…crap!

Could he borrow her WiFi (and maybe more snacks)?

Update Google maps and get back out and on track?

Lav’s partner just nodded, now made a believer.

He slipped back to the bedroom to wake and retrieve her.

Though a hazard to navigate laundry and clutter,

Lav’s reindeer-speed downloads set Nick’s heart a flutter!

And as he heard that telltale package go crinkle…

His eyes lit on Glutinos and sparkled and twinkled!

His droll little mouth curled up in a huge smile.

Now here was some sustenance that was more worth his while!

The three shared some tea and some gluten-free pastries

Kitty kibble it seemed, was to reindeer quite tasty!

Though Lav and her partner offered St. Nick more respite,

The night was still young. Nick had steps left on his Fitbit!

He filled up their stockings with Squishies and fidgets

With such deft sleight of hand none saw his quick digits!

And giving a whistle, he hopped back out the window.

Tucking and rolling, landing in his sleigh with some show!

And they heard his goodbye in a jolly old croon:

“Happy Christmas to all and to all a few spoons!”

 

PTSD is a Pain in the Neck!

I wrote this post from my phone app. I can’t get up. Dysautonomia isn’t known for verticality, but it is known for coat-hangar pain. Coat hanger pain is neck and shoulder pain that mimics a coat hanger in shape.

My current back pain is much worse than the coat hanger pain I’m used to. I often pull or twist something in my sleep, but this pain is on another level entirely. I couldn’t move even if I wanted to tough it out. I was too embarrassed to tell HR that I “threw my back out” when I called. I may be an older millennial, but I’m still a millennial! I’m too young for this?

I’m researching what it means to “throw my back out” to determine if that’s even an accurate statement. I’ve been in enough coat hanger pain to believe I couldn’t move, but I could theoretically have passed the “flee a fire test.” Not today…

Continue reading “PTSD is a Pain in the Neck!”

Hey Dysautonomia International: My anxiety is only “all in my head” because that’s where my brain is!

I had a dream last night that I was in high school again. That’s never a great start to any day, so I’ll blame that for the fact that I woke up on the wrong side of the bed this morning. I’ll blame that, work, and all the usual hassles of my diagnoses, but I’ll write this semi-ranting post anyway because I also partly blame Dysautonomia International.

In my dream, one of my friends in high school was trying to convince me to partake in her stash of alcohol. I wasn’t a huge party girl in high school, but I did occasionally drink at her parties. In my dream, I tried to explain to her that going to the party had used up all my spoons for the day. Drinking wasn’t an option. She replied that depression, which is all I was diagnosed with at that point, didn’t count for Spoon Theory. It wasn’t a chronic illness: chronic illness only includes the physical! Then I woke up.

I got on Facebook to see what that friend was up to now. Her attitude in my dream was purely the bully-in-my-brain’s invention. She is still – as far as I can tell – a bit of a high-lifer. She is/was also a lovely person. While on Facebook, I saw another friend posting about her difficulties completing day-to-day tasks during a bout of depression. She referenced Spoon Theory, and someone in the comments stated that she has the physical capability to leave the house and, thus, shouldn’t appropriate Spoon Theory. It sucks that her mind wouldn’t let her leave the house, but she could leave if there was a fire. My more-aware-of-social-concepts partner explained to me that appearing to show concern for someone on the Internet – but putting someone down in the process – is called concern trolling.

Continue reading “Hey Dysautonomia International: My anxiety is only “all in my head” because that’s where my brain is!”