Long Walks and Candlelight Zen-ers

I sometimes think my Partner missed his life’s calling as a therapist, but whenever I mention this to him he reminds me that the only “people” he wants to be observant of and “people” with on a regular basis are me (and maybe the cat, who is unofficially a “people,” too!)

As I’ve said before, my Partner was instrumental in helping me to identify that my “personal flaws” were really indications of ADHD, in obtaining my formal ADHD diagnosis (functioning as my “family” interview in lieu of my family of origin, who should never be trusted to speak on my behalf, ever) and also helping me come to terms with the idea that having ADHD, which is sometimes classified as a “learning disability,” doesn’t invalidate my elite school undergraduate degree or the grueling work I did to complete my thesis. In fact, we largely worked out that ADHD was even something to consider because he read an Atlantic article about an Ivy League-graduate female writing about her experiences, handed it to me, and went, “That’s you, and before you freak out, note the ADHD didn’t mean she didn’t graduate from a top tier university and work for a competitive magazine. So, it doesn’t mean you are stupid at all.”

He has never really stopped knowing me better than I know myself since that first insight. He worked out a lot of my personal trauma history from context clues before I ever felt comfortable sharing it (or even acknowledging to myself that those experiences “qualified” as trauma.) He also originally came up with many of my core grounding techniques. He’s the one who worked out, for instance, that stating the date and time isn’t as effective as one might think during a dissociative episode for someone who also has ADHD, as even when I am completely “in the present” I am often still completely obvious to the date and day! He’s the one who suggested instead simply saying, “You are here. This is now.” And – when I asked him in 2018 what the point was of reminding myself that it was the “here” and “now” (date non-specific because I wouldn’t have said any date in childhood, so if I’m saying anything at all, it’s already not childhood) when 2018 was so damn close to those other childhood and previous 9th Circle of Hell adult trauma memories that it felt indistinguishable – he is the one who calmly replied, “This year is shit. It’s 90% the same shit as the shit you’ve been through in the past. But, that makes it even more important that you remember that it is, at the same time, still 10% different shit. If you must live through current trauma, don’t torture yourself further by also reliving your past similar trauma all at once.” ADHD all-or-none non-linear conceptions of time do me no favors on that front.

He’s the one who came up with the idea of wearing beaded bracelets, keeping a reality journal, and recording my own “guided meditations” in safe, happy places to remind myself that happiness is possible when in the depths of Hell. I still fill out my reality journal daily. I still wear beaded bracelets and remind myself that, “You are here” and “This is now.” And, I still struggle with feeling triggered – without necessarily confusing whether I am actively safe for the moment – because traumaversaries are a thing.

Standard therapy for trigger management, dealing with emotional flashbacks and grounding bugs me for multiple reasons. The biggest reason tends to be it always starts from the assumption that a person is safe in their present. That was not the case for me in 2018, and it is not the case today for many others who are suffering from complex PTSD and/or dissociation while simultaneously living in poverty, chronically ill, of color in an intolerant neighborhood, disabled and/or still too young to live independently to escape their childhood abusers. It is entirely possible to have PTSD while still also being actively (re)traumatized.

Another thing that bugs me is that grounding techniques tend to be very one-size-fits-all. The same techniques are recommended whether a person is currently experiencing an active mental health crisis, engaging in day-to-day mental-health management, or “just” feeling a bit more triggered than normal because of a traumaversary. I don’t understand why therapists assume that engaging in the same things that grounded me in 2018 – the big guns of my mental health management – couldn’t actually re-trigger me back to those unpleasant memories of why I needed those big guns if I used them again in 2019 – especially if I’m trying to use them to stop thinking about 2018 to begin with.

Yes, my beaded bracelets were “new” in 2018 compared to prior crises, so they were helpful for grounding last year. And, yes, I’ve gotten used to wearing them, and they remain a useful societally acceptable wearable fidget in 2019. But – since I was wearing beaded bracelets on my worst days in 2018 as well as my best – they no longer quite distinguish between the 2018 “then” and “now.” I said, “You are here; this is now” in 2018 as well as in 2019. So, that too, can only remind me that (at least) I am no longer a child and that I have adult options – but it can’t distinguish this year from last year. My reality journal is great for identifying why I feel triggered in 2019 seemingly out of the blue, and it is great for day-to-day maintenance. But, it also isn’t enough by itself for a traumaversary. None of my daily maintenance tools by themselves are enough.

Yet, I simultaneously wouldn’t want to haul out my biggest guns – such as my personalized guided meditations – for anything other than a true crisis. I don’t need to be reminded that a place outside of Hell exists and that happiness exists in 2019 the way I did last year. I’m present enough, even when feeling floaty lately, to still know that I’m generally happy and that it’s weird that I’m feeling something in my body that doesn’t match my mind or my external circumstances. I just need a little boost because my nervous system sometimes decides to hijack that happy brain for a bit.

Most grounding techniques don’t seem to consider the different tiers of grounding-type interventions that might be required for different circumstances – or different years or times of years – at all. And – despite the years of therapy and all the many books on complex trauma, dissociation and social justice that I have read – in the end it still ended up being my Partner who realized that tiered interventions might be required in self-care, just like tiered interventions are common in acute care.

Continue reading “Long Walks and Candlelight Zen-ers”

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End-User Experience

SelfCareRevelation
<Image Text>: “Most People have ‘Ah ha’ moments. I have “Oh for fuck’s sake, fuck this shit” moments.” Note: this is a pretty apt description of the process of me finally accepting that I’m better off actually taking care of myself rather than letting the opinions of others prevent me from benefitting from readily available accessibility aids that would save me critical spoons.

Movie theaters have become events in and of themselves. One that opened near us recently has a full restaurant inside of it where patrons can eat at traditional tables before the movie – or order their carnitas nachos to be served at tables inside the theater while they recline in their heated leather seats. The theater also boasts gourmet versions of standard guilty pleasure treats made with all natural, non-high-fructose-corn-syrup ingredients like white raspberry slushies and cheddar and caramel popcorn.

And – although they offer treats with more FODMAP-friendly ingredients that make me less likely to need them in a hurry (if you know what I mean) – they additionally offer bathrooms with marble stylings and individual sinks each equipped with their own personal accoutrements and air dryers so I’m not missing even more of the movie than necessary getting stuck waiting in a line when I’m hoping to rush back to my seat after an inevitable potty break during the three-hour-long Avengers: Endgame.

All of this luxury comes with a price tag roughly 20% higher than a standard 3D theater without these little extras. My Partner and I only see a handful of movies in a theater each year. We figure for those movies we judge worthy of a night out, we might as well make it a true experience. (Also, those bathrooms. Seriously. That alone is worth 20% more to any spoonie with GI issues as part and parcel of their diagnosis…)

Unfortunately, the first time we saw a movie in our new elaborate dine-in theater, the experience was missing one detail that further explains why, in the end, it hasn’t only been the price tag that has limited the number of films we’ve seen in a theater each year. Closed Captioning.

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Work/Life Int-egg-ration

I used to think my boss’s term for work-life imbalance was something he made up. I don’t know why I thought this, other than that he always said it so confidently and without attribution. I’d never have had the confidence to pass off a saying that often without crediting the original source, so I just assumed. Thus, I figured I could never share it on my blog because it would be too personally identifying. I don’t know why I never just googled it. If I had, I’d have established long ago that the term isn’t something he came up with. He cribbed it from a Forbes article – or possibly Berkeley’s MBA program – and just takes it to illogical extremes.

Why should I have assumed, given that he liberally borrows his own employee’s work at conferences without remorse, that he’d somehow do otherwise with awful aphorisms? (Of course, the way he adds on that we should all be so grateful for our “fulfilling” job that we are willing to work many nights and weekends to hit our growth goals even as he screams at us might be considered ‘original!’)

There are two kinds of people who live permanently only in the “now” or the “not now.” Time blind ADHDers – and bully bosses. How does one tell the two apart? Well, in my experience, folks with ADHD will inevitably blame themselves for any missed deadlines or forgotten important project components – usually to the rejective sensitive extreme – while self-absorbed bosses will simply assign major deliverables with less than twenty-four hour notice to employees whenever they suddenly realize that they actually need something for a conference that they could have requested weeks ago if they cared at all about the “life” part of “work-life integration.”

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Subway Sociology #6: I Seat Drunk People

Did I ever mention that I am an irony magnet?

This is an important baseline state of reality to establish for new readers who might otherwise question how my Partner and I, specifically, ended up being the second and third of (hopefully only) three residents of a large urban city stuck explaining the intricacies of Pokemon Go to a drunk “friend” supposedly hiding from his “ex-girlfriend” at our table at Shake Shack while thousands of gaming confederates across the country caught their Bagon unaccosted during Community Day.

Since that drunk “friend” specifically requested “cover” while he snuck away to the nearest subway entrance, our experience thus represents the sixth valid trial of my subway sociology experiment. My original hypothesis was that the line I take to improv is statistically “weirder” than nearby lines. My current tally of blog-worthy baffles runs 4:2 in favor of the line in question. Suggestive, but not at all statistically significant, especially when properly controlling for my own frequency of line ridership.

My Partner, however, wishes for me to note that I have potentially overlooked two additional hypotheses worthy of testing: a) my irony magnet superpowers extend to subways and b) there are statistically higher rates of oddball experiences on all subway lines (as well as in general) whenever I am nearby. He pointed out that my having previously mentioned hydration drinks being advertised on public transit as hangover remedies without actually describing any real-life interactions with their target audience could be construed as daring the universe to offer me up a live specimen. Irony. Magnet. (He also suggested, after he had finally forced our “friend” out into the wilds again, that I should refrain in the future from being the one to nab seats for the two of us even in a crowded fast food joint well over its listed capacity of 131 people. The risk of my irony powers kicking in is just too high whenever I’m talking to strangers for even a minute…)

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Read Bad Books

Why do Targaryens make terrible stockbrokers?

Their assets always end up in a fire sale!

I am no longer sure I’d call anything George R.R. Martin writes “good.” He burned some bridges with this leal reader with Winds of Winter. I finished a real-life Ph.D. with ADHD in less time than it has taken GRRM to write one book. I’m more than fine with HBO scripting the only conclusion to a Song of Ice and Fire to ever see the light of day. At least it means that there will be a conclusion. There is, however, still something disheartening about getting most of the way through the book GRRM wrote instead and realizing he only covered the first half of 300 years of Targaryen history. Fire and Blood: 300 Years Before Game of Thrones (a Targaryen History) is an epic monument to paid procrastination and GRMM still couldn’t even finish it? Really?

That is…disappointing. Especially given the fact I am listening to the prequel on audiobook, and it is 26 hours long! I’ve been encouraged by my neuro-ophthalmologist to rest my eyes when I don’t need them for work because their ability to focus together continues to decline. Thanks, Ehlers-Danlos Syndrome. Listening to GRRM’s words instead of reading them makes certain quirks of his writing almost painfully apparent. (I wonder if his editors were equally burned by this point and so desperate to ship anything new of his that they only gave Fire and Blood a minimal once-over?)

Three-quarters in, I’m not sure from a literary standpoint whether Fire and Blood is actually well-written.  It overuses words. Like, seriously overuses them. Like “overuses them so much that it has become a game for my Partner and me to take a non-alcoholic drink every time he uses the word ‘leal.'” (GRMM is obsessed with loyalty, but our ‘drinking’ game has to be non-alcoholic because I’m pretty sure we’d both die if we tried to use alcohol during the playing of The Leal Deal. GRRM has singlehandedly ensured that even this girl who is dysautonomic has consumed many more than her recommended liters of water daily this week.) It also has an annoying habit of setting up mysteries that are never resolved. “What was in that letter” will never be known to readers. I’m fairly sure GRRM knew what was in the letter – it’s his imagination after all – so would it have killed him to tell us? What does playing coy accomplish in a one-off?

I am not sure, for these reasons, whether what I’m currently reading is actually good. I am sure, however, that admitting I’m reading it is, at least, not embarrassing. That is not true of many of the other books I have read over the years.

Continue reading “Read Bad Books”

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.

Shooting for the Spoons

A lot of popular wisdom is rather dubious when actually examined. For instance, the common career advice to, “Shoot for the moon. If you miss, you will still land among the stars.” Unless the flat-Earthers know something I really don’t, even good old Sol is much further away from us than the moon…

Another bit of dubious popular wisdom I hear regularly from would-be experts (who have usually never heard of most of my diagnoses before) is, “An apple a day keeps the doctor away.” I certainly am careful with my diet, but an apple a day does not keep the doctor away for me. In fact, following the common wisdom for most of my working life to eat as naturally as possible on business trips to minimize GI symptoms has been about the worst possible choice for me. On travel per diem – and thus not responsible for remembering expiration dates for the fresh veggies and fruit that I so often forget in my fridge for weeks until they spoil – I would load up on all of the fresh fruit in an attempt to keep the gastroenterologist away. And, yet, I always felt like my IBS symptoms were worse on business trips anyway. The inevitable refrain from the “apple a day folks” – and many of the doctors that were supposedly being kept away – was that it was just “my anxiety” exacerbating my symptoms. So, I both had to plan for disaster each time and for the bully-in-my-brain to refrain how it was my fault since I couldn’t just “relax.”

Continue reading “Shooting for the Spoons”

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”

Candy Canes

Image result for pokemon go pikachu santa hat
Image: Pikachu in a Santa Hat from Pokemon Go.

Pokemon Go had a super event this weekend, in which all their previous special events were combined. Increased spawn rates for all prior Community Day Pokemon were available all weekend, but, within the weekend, there was one three-hour period wherein all the prior Community Day event bonuses (including double candy and stardust) were also available at once.

Because it is winter, everyone is sick, and I’m still destined to catch every acute illness that I am ever exposed to, I was getting over being sick and the concomitant flare this weekend. I was aware of the spoon cost to participate fully, but self-care sometimes means caring for my mental health even when it costs my physical health.

I’ve considered mobility aids before. There’s probably some residual feeling that I’m a pretender who doesn’t deserve one wrapped into my prior avoidance. It’s hard to get over a lifetime of ignoring your own needs because someone else has it worse. Mostly, though, I haven’t used one because I haven’t seen how it would help.

All the canes I’ve ever been exposed to are sturdy, wooden things that have to be held onto like an umbrella.

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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.)