Procrasti-Not-Us

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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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.

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:

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.

Messages in a Bottle #7.2: 525,600 Words

Written at some point prior in May 2018, intended for 5-26-18, my one-year blogiversary. The intro to this post (including why it is so delayed) is here.

—

525,600 minutes, 525,000 moments so dear.

525,600 minutes – how do you measure, measure a year?

In daylights, in sunsets, in midnights, in cups of coffee.

In inches, in miles, in laughter, in strife.

In 525,600 minutes – how do you measure a year in the life?

How about love? How about love? How about love? Measure in love. Seasons of

love.

525,600 minutes! 525,000 journeys to plan. 525,600 minutes – how can you measure

the life of a woman or man?

In truths that she learned, or in times that he cried. In bridges he burned, or

the way that she died. (don’t worry, not a tw, despite what the lyric might suggest!)

It’s time now to sing out, though the story never ends

Let’s celebrate remember a year in the life of friends

I had to perform that song as a pledge event for my sorority in college. Pledging unending sisterhood or some such. Does it surprise anyone that I joined a sorority? Honestly, it kind of surprises me, too. I’m also kind of surprised I didn’t fall over while attempting to vaguely “dance.” Undiagnosed Ehlers-Danlos Syndrome explains a lot in hindsight about why I got kicked out of ballet class (and soccer) and hidden away in the back where no one could see me for that college initiation “performance.” But, rush was a thing that was a fairly big event even at my geeky college. I did it as something to do to fit in in a new place, and I was sufficiently mystified when offered a bid that I accepted it partly on some vague grounds of “leadership activities look good for grad school” and partly some deeper, “you mean there might be a school where I’m actually vaguely acceptable for who I am?” I am a very forward planner and easily flattered by simply not being rejected.

Fully Reversing My (Claim to) Mental Illness?

Do these two Pinterest pins seem equivalent to you?

I’m going to ignore for a moment the implication by a UK PTSD charity that PTSD is “fully reversible” with CBT and EMDR. I’ve tried both, and I’m still waiting for that reversal. (Of course, given how many unique traumas the 9th Circle of Hell as dumped on my brain, including these past two months, how would I know if one ’bout’ of PTSD had ever cleared up before another re-inserted itself?!)

I want to point out, instead, the claim on the left that “PTSD is NOT a Mental Illness.”

I’d like to claim I’ve been doing something really productive with my not-FMLA. However, all I did Thursday was be kept up all night by nightmares preceding my most recent meeting with 9th Circle of Hell officials, then crash out after it and sleep for 15 hours. Apparently, my body thinks that “self-care” means hours of watching non-triggering reality television (think shows like Naked and Afraid where survivalists pit themselves against the elements or Wicked Tuna, where fishermen pit themselves against fish) and staring robotically at Pinterest at 3am when that reality television has been replaced by infomercials. My body thinks that “self-care” means not sleeping, then sleeping long enough to try and recoup six months of spoons at once after physical distress overwhelms mental distress. Would that spoons worked that way, body…

Pinterest really wants me to pin both images above. They keep showing up in my feed. I don’t have a particular problem with the image on the right. (I did read once that Healthy Place promotes some pseudo-scientific claims alongside their generally sensitive memes, though, so I’m still careful about anything they produce.) I do have a problem with the image on the left. Isn’t PTSD just mental illness resulting from self-protective mechanisms persisting so long after psychological (and physical, emotional, sexual and bullying, too!) abuse until they ultimately become maladaptive?

The definition of mental illness is a set of health conditions involving changes in emotion, thinking or behavior that cause distress and difficulties in functioning for an individual. While dissociation has occasionally been neuroprotective during the worst abuse, I haven’t found that being unable to speak while my boss yells at me as I watch the encounter from outside my body to be anything other than “distressing.” I also have yet to see how nightmares are a viable part of any coping strategy – even a maladaptive one – even during periods of active abuse. Abuse and the covering up of abuse have resulted in most-likely permanent changes to my brain that cause me significant distress and difficulties in functioning. That sounds like mental illness to me.

While I deeply hate that other people caused those changes by being abusive assholes (especially abusive assholes that have, too often, gotten away with it), I don’t see how the fact my brain changes were done to me somehow makes me superior to someone who is distressed and impaired in their functioning by endogenous Generalized Anxiety Disorder or Major Depressive Disorder. I don’t see how the fact that PTSD is, by definition, exogenous spares it from being a mental illness. The fact that advocacy groups would try so hard to suggest it does spare it gives off an unpleasant whiff of mental illness stigma. What is the purpose of going to great artistic lengths to convince others that PTSD isn’t a mental illness other than to distance it from that a thing that is somehow lesser, namely mental illness?

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.

Messages in a Bottle #6: Cool as a Snowball in H#ll

From what I can tell, we briefly hit temperatures that were literally hotter than (the 9th Circle of) Hell this week. And, just as the Northeast might get a break from the insane heat wave that is gripping most of the country – for two days at least – I might be leaving it for another roundtrip to Hell. Argh. The 9th Circle of Hell additionally lives up its name by having always been unlivable in the summertime for someone growing up with undiagnosed Ehlers-Danlos Syndrome and the dysautonomia that likes to hitchhike.

I recently(ish) read two separate blog posts (by Narcoleptic Aspie and Crafts, Chronic Illness and Adulting) about how bizarre trying to use a Fitbit or another fitness tracker is for someone with a condition that includes autonomic nervous system dysfunction. Lavender from two years ago completely agrees with that sentiment.

I also discovered this random “journal” entry – not even written in my usual locked leather-bound journal because I was simply too out-of-it to hand-write anything – floating around in the flotsam and jetsam of my personal Dropbox.

The date of syncing of the post was late-July 2016, though given that my text notes sync to Dropbox only when I use wifi, not data, on my phone, the note itself could have been written on my phone anytime within a few weeks of that date. Out of curiosity, I went back and looked at my phone to see what Samsung Health recorded as my low heart rate at around 5:30am in July 2016. (Yes, this does mean my phone is over two years old, for anyone asking. I drop it constantly I’m not going to replace it every time a new model comes out just to shatter another screen!) I suspect this entry corresponds to a heart rate of 46 on July 12th, 2016. My recorded high for that month (156) also seems to have come at a time I marked myself as “at rest.”

It’s strange to think that if, on that date, I’d considered that I actually did have those extremes of heart rate while simply sitting inside in the A/C – and that it was my body, not my technology, that was broken – I might have been diagnosed at least a year earlier. But, of course, I assumed the technology just wasn’t that reliable. (Also, would that I could go back in time to a moment when the world wasn’t ending right now, as was the case two years ago! You know it’s a Messages in a Bottle when it contains that line. The world most certainly isn’t okay in “right now, right now“!)

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

Where’s Whoopsie #12: Hear Me Tyranit-roar

Hi, I’m Lavender and I’m a geek.

You’ve probably already picked up on that by now, but just in case you haven’t, telling you my Partner and I have been eagerly anticipating the Pokemon Go Community Day with abundant tyranitars for weeks now probably confirms it.

Today was a rare good day. We went to one of the biggest parks in our city. We each managed to collect enough candy to evolve multiple tyranitars, and we participated in some rare legendary raids with enough people to actually win (even though we *cough* don’t have enough friends to field a team outside of these community days due to *cough cough* social anxiety). We both even managed to get high-level shiny tyranitars to evolve. (It seems only fitting that someone with ADHD – stereotyped as “ooh, shiny” – should need shiny pokemon). My spoons did give out before my phone battery and the event did, but with appropriate planning for water, meds, rest breaks, shade and cooling aids, I lasted longer than I expected to. The heat and sun weren’t unbearable, and we stopped for burgers and ice cream sandwiches in the A/C when I needed to rest.