Procrasti-Not-Us

Working from home
Image: Brain says to heart, “Now that we work from home, self-discipline is absolutely essential.” Heart, playing video games, replies, “Speak for yourself, dork.” Link to original image here

Did you know that the term procrastination comes almost directly from the Latin procrastinatus?

This is relevant because I have a new blog page on my main site that does not have a Latin title. This pains my Partner deeply. I think it pains my Partner almost as much as typing pains the hands of someone with Ehlers-Danlos!

My Partner pointed out recently that the saga of the 9th Circle of Hell has probably become so complex that any potential new readers will have a hard time figuring out what the heck I’m talking about on a weekly basis. (The bully-in-my-brain, of course, immediately added: “even more so than they would normally have difficulty just in understanding the ramblings of someone with ADHD with pronounced hyperactivity alone.” Thanks for that, brain.) I replied that I actually take great pains to try and link at least the most proximally explanatory blog posts, so readers can catch up if they want.

He then pointed out that that effort probably costs me more in hand cramps trying to back-link enough blog posts each time I write a new one to make my story make sense to new readers – and to those of my readers with brain fog in general – than it would to just maintain a dedicated page. Because he is sensible – and my hands really could use the rest – I followed his advice.

I created a Glossary of Terms this weekend. It should contain all the key descriptions needed to understand my rather topsy-turvy life. My Partner desperately wanted me to call it the Dramatis Personae page – because Latin is awesome – but it turns out that I write a lot more about places than people, with the possible exception of him. I claim it’s because I respect the privacy of others whenever possible. It might also just be that I am socially anxious and don’t have a lot of close in-person friendships…

Either way, I couldn’t justify the Latin page title. And, the effort to create that Glossary of Terms seems to have sapped my creativity to write another blog post this week. I’ve been procrastinating long enough that I now concede that writing a blog post telling readers to read my not-a-blog-post will probably be my only post this week! But, that confession at least does allow me to honor my own and my Partner’s creative styles and kill two birds with one Latin pun title. (I hope my Partner is pleased.)

I think my brain has struggled to write another post this week because it thinks it already has written one. It turns out there are enough “Easter Eggs” in the Glossary of terms – including how I got the pseudonym Lavender, an introduction to the not-horrible therapist whom I keep claiming I will write something about someday, a new Where’s Whoopsie, and even a link to the very first piece on mental illness that I technically ever wrote – to maybe back-justify that I even truly did kind of write an original post. (The aforementioned Easter-Egg article was written on a whim for the same reason I started my blog. It technically was posted on another blog two weeks after I started my own, but I wrote it first and submitting it probably also helped inspire this blog. But, I – in true ADHD fashion – kind of forgot that it existed at all or that at one point I was open to maybe trying to guest post on other blogs eventually. Oh, well. My life is too complicated to need anymore rejection therapy right now.)

Have a look at my Glossary of Terms and hopefully learn something new about me. I’ll write a real post next week, I promise! (Though, at least on the plus side I’ve actually managed to be more productive working from home. Not having to see my bully-of-a-boss on a daily basis at least reduces the amount of time I spend frozen in panic unable to even start a project for fear of him already despising it.)

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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.

Continue reading “Eye Rate”

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.

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)”

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.