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fishermen pit themselves against fish) and staring robotically at Pinterest at 3am when that reality television has been replaced by infomercials.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?

Continue reading “Fully Reversing My (Claim to) Mental Illness?”

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Blog Awards Series #1: The Internet is for Blog Awards

We could alternately title this post “What Do You Do with a Degree in STEM on Not FMLA?”

I have never seen Avenue Q. This, in and of itself, is not that unusual, even for someone who likes musicals. I’ve never seen Hamilton, and that boils down to nothing more than the fact that even the cheapest tickets are multiple hundreds of dollars! For many years, Avenue Q was the Hamilton of its day. I had the soundtrack on my playlist, but couldn’t afford to see any production of it as a poor grad student.

However, eventually, I got tickets for it. I got tickets for it no less than *three* times in fact, and each time something managed to happen. One time, it was a major argument with my Partner that was triggered by – what else? – PTSD symptoms. That argument ended up being very instrumental in us getting to where we are today, so I don’t regret it. It helped me to learn to trust. It helped me learn that sometimes things can unravel and still be stitched up again. It also meant I missed orchestra section seats to Avenue Q.

The second time we attempted, I honestly don’t remember what kept me from actually using our tickets. It might have been 9th Circle of Hell stuff or work stuff: I honestly don’t know anymore! The third time we were just plain too sick to use the tickets. By that time, we were no longer risking big money. We simply had tickets to a local community theater production, but still, my Partner and I were ‘cursed.’

We talked briefly about seeing if there was a local production of Avenue Q during my not-FMLA, especially one before we returned to the 9th Circle of Hell. It’s probably good we didn’t, as we both have spent the past several days incredibly sick. We’d likely have missed the show again, were we to have tried.

Although I just posted yesterday, I’m going to go ahead and start my blog awards series today. I’m only, oh, a week or so later than I claimed! I have already acknowledged I have blog awards going back to July 2017.  If I don’t just start posting, the ADHD forgetfulness probably means I’ll forget again until it’s too embarrassing to bring up.

I take back everything I said about WordPress’s new save feature. I patiently found all seven of those blog awards and saved them on the app on my phone. Guess what posts are no longer showing up? Sometimes technology works, and you are the broken one. Sometimes the beta version really is broken, and that is absolutely what happened with the WordPress save feature! I planned to start with the oldest post and work forward, but I’m starting instead with the most recent. It was the easiest to find!

Today’s entry is from Ashley of Mental Health @ Home:

Continue reading “Blog Awards Series #1: The Internet is for Blog Awards”

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.

Balanced Scorecard

As told by Eckhart Tolle, a Buddhist master named Ram Dass once stated, “If you think you are enlightened, go and spend a week with your parents.” I’ll be honest, I wasn’t super enthused with Eckhart Tolle’s books in general, but I did like that quote.

It appears to be a common enough occurrence that we can never fully escape who we were in childhood when we return to the place we lived while growing up. That…sort of sucks massively when who you were growing up was a traumatized kid with no safe space to create her own identity without it being used as a weapon to bludgeon her with, a system that tore her family apart and claimed lives literally and figurately, and a pesky habit of using dissociation and time loss to hide from it all.

For many, the smartest thing to do would just be to never return to the Gods-forsaken places of their youth at all. Enlightenment is overrated in the face of basic safety. It sucks more if, as a thirty-something adult, you are repeatedly stuck returning to that place because the damn system only got worse even after you left, the black hole of bureaucracy won’t let you yet get an innocent family member out to another state (gods-damned waiting lists), and your version of “regression to childhood” not only seems to be too often to feel like that same helpless kid again in the face of the system that made you that way but also to regress to the same coping skills: dissociation, time loss, and misplaced sense of any adult competence, oh boy!

Continue reading “Balanced Scorecard”

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!)

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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

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Absent without (Family Medical) Leave

I know the DSM-V no longer includes the term “nervous breakdown” anymore. I’m fairly confident even if it did include it, since the origins of my panic attacks, crying, dissociation, and depression are quite well known, I’d still just end up labeled with the “dissociative subtype” of PTSD (aka the compromise that is supposed to cover C-PTSD).

I have had to deal with the 9th Circle of Hell about this damn most recent abuse and medical-neglect-leading-to-multiple-medical-crises case three times within four weeks. I will have to go back to Hell again this month. I’m fielding calls on top of that. I’ve spent a quarter of my take-home pay for the past few months on that shithole, be it in travel fees, medical bills, lawyer’s fees, etc. I’m not even the only one financially contributing to fighting for “care”, but when the cost of failure is potentially life and limb, I’m not questioning it so long as I still have the money. The origins of my distress are not a mystery and fit neatly into the DSM-V trauma disorders bucket. I doubt I’d be said to be having a nervous breakdown even if the term was still diagnostic.

Add on top of the trauma situation itself a boss who lost it with me over email when I politely sent him a notice that I could no longer attend a scheduled internal presentation because I had to speak to state regulators in the 9th of Circle of Hell during that time and was given no choice of times, though, and – all technicalities aside – I think I’m having a nervous breakdown.

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My PTSD Awareness: Currently Subject to Mental Health Austerity Policies

PTSD_Awareness

Trauma_is

PTSD sucks. I have previously written 48 posts to this effect. (But who’s counting?)

Today is National PTSD Awareness Day. I’m still generally too overwhelmed in my ability to cope from ongoing 9th Circle of Hell trauma and PTSD symptoms – oh the irony! – to muster up my usual witty commentary on my awareness of awareness months at the 11th hour.

Instead, have some humor (with a grain of real truth in it) courtesy of my Partner instead.  This conversation took place tonight in regards to whether I should still go to open mic night knowing I have to deal with the 9th Circle of Hell again on Friday. I felt guilty for not obsessively staying home and continuously preparing, even though that was liable to just end with me a dissociated puddle on the floor.

Partner: “Remember how austerity was a resounding success for the world’s economies during recent economic troubles?”

Lavender: *Crickets*

Partner: “No? Well, mental health is the same way.”

Take care of yourself. Austerity in economics and/or mental health care is rarely a sustainable solution for long-term shocks.

Improv #9: In-city-cure attachment

I’ve lived in a lot of places in my life. Enough that I’ve only ever stayed put long enough in my adult life to be called for jury duty once, during graduate school. I’ve lived on both coasts and in the middle. I’ve lived in cities I’d go back to in a heartbeat if a job presented itself, and I’ve lived in cities that I ran from as fast as humanly possible.

I’ve said repeatedly that any place I live in that isn’t the 9th Circle of Hell is home, but I’ve also said that home is nowhere. Each city has been a steppingstone. It has been something impermanent to be enjoyed for a few years and moved on from when career or family beckoned ever onward. I’ve never fully believed that I’d ever stay in one place long enough to truly settle down, even as I carefully chose my current city with the stated hope of finally finding a way out of the 9th Circle of Hell for my family situation for good. I look forward to the day in a few years when I can legitimately say I’ve lived away from the 9th Circle of Hell more years than I’ve lived in it, but it would take a very long time to be able to say I’ve lived in any one place longer than I walked the cursed ground of my childhood.

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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.

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