Meds and Me

Alright guys, it’s confession time.

I haven’t written anything in weeks.

Thank goodness for me, I had a bit of a backlog, but it was driving me crazy trying to figure out what was causing my “writer’s block”.

At first I figured everyone gets a little burned out, and I didn’t worry, but as the days and weeks went on, I started getting really anxious that I’d lost my writing chops.

That anxiety should have clued me in. But even though I’ve had anxiety since I was a tiny human (my family jokes that I started stress biting my nails the day my little sister came home from the hospital), I didn’t recognize it this time.

And that should be a good thing! It proves that I’m so well medicated, that I’m not used to being an anxious wreck anymore.

Once I realized that, I knew what happen. My psychiatrist wanted to try decreasing one of my anxiety meds, and since I do up pills two weeks at a time (it makes sense when you take 22 pills a day), I didn’t correlate the med decrease with the crippling anxiety I’ve been feeling.

I’ve been anxious about writing. About going back to school and deciding on a career. I worry that my wife will die. I worry that I’m wasting my life. I’m worried about getting old. I’m worried about dying. And about not dying. Sigh.

So clearly, the medication is going back up where it was. Depending on how things go, I may be quiet for a little while. I figure blogs are for honesty, so here I am.

Candidly Mental

This post discusses Eating Disorders, Suicidal Ideation, and Self Harm. If you think reading this might be harmful to you, please stop now, and please take care of yourselves my friends. 

There’s nothing like a therapist to start you thinking about how things were. Because I don’t know about you, but for me, mental changes come so slowly, that it’s hard to remember how bad things were at the beginning. Or the middle, for that matter, as I didn’t start seeing this therapist until my mental state had already improved by leaps and bounds. But even then, me, my team, and my family were trapped in a cycle of putting out fire after fire, trying to keep me stable, and while logically I know that things are different now, it doesn’t always feel that different. More importantly, I don’t feel that different. But I am, and I can prove it.

Three years ago, I was low, lower than I think even I knew. Put it this way- on a scale of 1-10, I was a negative two. My life revolved around the amount of calories I took in, and the amount I could manage to get out. My brain actually turned it into a kind of math puzzle. If calories (C) equals food minus exercise, how many miles will you have to walk before you’re allowed to eat dinner? This equation became my whole life. Obsessing about calories in verses calories out, slowly decreasing my portions, and pacing. Endless pacing. I had shoved out my life all the things that I loved, and I didn’t even know it, because the numbers were all that matters.

The one other thing I did have time for was hurting myself. Not that restricting and over exercising wasn’t hurting me, but that wasn’t really why I was doing it. I knew enough about the body and nutrition to know that technically what I was doing was harmful, but it was more of a secondary thing. Self-harm was different. It was conscious and purposeful, and as confusing as it sounds, back then it was the one bright part of my day. When it came to restricting and exercise, I could never do enough to make my brain happy. If I set a goal, I wouldn’t feel good even if I competed it. I wouldn’t feel good even if I surpassed it. How depressing is that?

I worry when I talk about self-harm, because I don’t want to romanticize it. It’s easy to avoid making an eating disorder sound good, because when I was restricting, all I experienced was misery. I will tell anyone who will listen that eating disorders are not cool, they’re not sexy, or glamorous, or anything but a life full of desperation and sorrow. I struggle doing the same with self-harm, mostly because given where I was at the time mentally, I needed it. Please note the past tense, because now that I have a therapist, and meds that work, and a collection of coping skills, I don’t need to hurt myself anymore. But I did then. And I didn’t care about infection, or about causing more harm than I intended. I certainly didn’t care about scars, although I wish that I had, because mine lead to a lot of awkward questions now.

It is impossible to sustain this sort of life, and when I finally got help, I was circling the drain. Something I’ve since learned is that when you want to stop a behavior but can’t, you’re way past being able to fix it on your own. I spent about a month trying to deal with it myself. I’d do okay for a day or three, but eventually everything would come crashing back down, worse than before. So finally, after almost of year of living a secret life, I told someone. You’d think that something so important would be imprinted in my brain, but to be honest, I don’t remember it. This is probably a testament to how malnourished my brain was, and how disconnected I was from reality, but it happened, whether I remember it or not. I don’t remember how it went, but I definitely remember what happened next.

I’m not going to go into specifics about treatment, mostly because for the first year, it was a complete wash. Undiagnosed autism made the standard treatment model ineffective, and after therapist after therapist told me that I was stubborn, and rigid, and unwilling to change, I started to believe it. I would do well for a few weeks, only to relapse the minute I was given a little freedom. This happened over and over, and this hopelessness that I wasn’t good enough to get better, and the loss of my only coping skills, dropped me into a pretty dark state of mind. The feeling started slowly and crept forward, the feeling that I would never get better, that I would be stuck in a body I hated, that I was hurting the people that I loved. It whispered in my ear that maybe I wasn’t meant for this world, and maybe it would be better without me. This is a dangerous pit to fall into, because often times, in trying to climb out, you end up digging deeper instead. Instead of paying attention in treatment, I was daydreaming about what the world would be like without me, and how I could make it happen. It didn’t happen. Clearly, I’m still here. But it took several hospitalizations and some new diagnoses to keep me here.

Recovery is a strange beast. In the beginning, it occupies your mind every moment of every day. You go around and around, questioning if recovery is worth it, if you can do it, or if you even want it. And everyone has a different path to recovery. Some people can recovery on their own, some only need one round of treatment, and there are chronic types like me, who need to do it over and over again before we can get it right. I can’t tell you what happened when I truly got it right. I’d like to stay the stars aligned and everything I learned came together in one magical recovery moment, but it wasn’t like that.

In order for recovery to work for me, I had to figure out how to replace restriction, over exercise, and self-harm in my life with something healthier. Even more, I had to accept one thing that no one will tell you about recovery- those healthy replacements? They’re never going to work as well as the unhealthy ones. And you’re going to have to keep making all those healthy decisions for the rest of your life, and that’s really hard. I’m stable enough to make good decisions maybe 95 percent of the time. Even in good times, I’m not perfect. But if something terrible happens? If my meds stop working? I don’t know if I’ll be able to do the right thing. I hope. But I’m not sure.

We all change throughout our lives. Some people go through more drastic changes than others, and I have no problem saying that I’m one of those people. In just three years, I’ve gone from the desperate, disconnected person who was barely hanging on, to the person my therapist was talking about today. I take my meds, I follow my meal plan, I use my coping skills. I connect, not just when I’m in trouble, but for the joy that is being part of a community. I am neutral on my own existence, which might not sound like much, but is huge for me. I still don’t feel very different, and I don’t know if I ever will. But I don’t think that’s the point of recovery. As long as I feel like me, and as long as I’m living the life I want, past me is just that- past.

Signposts

On Tenterhooks– In a state of uneasy suspense or painful anxiety.

I most think of tenterhooks in the middle verse. Being Bipolar leaves me with a sense of anxiety because I know that, even though I’m medicated, a depressive or a manic episode can show up at any time, with little warning.

The thing about being depressed is

That it slowly and sneakily tells you that

There is only one way that you can go.

Depression’s signpost has one direction

And that is down.

The thing about bipolar disorder is

That it convinces you that there’s no middle ground

And that ricocheting is your reality.

Bipolar’s signpost has two directions

And that is high and lows.

The thing about life is

There are more than one or two ways to be

And so many of them are good.

My signpost has an infinity of directions

And they are waiting for me.

How To Meesh Redux

My blog name, Stimtheline, was created to reflect the fact that I walk, and frequently cross over, the line between Autism and Eating Disorders. I spent almost two solid years in Eating Disorder treatment, and for the first year, we didn’t know that I was Autistic. Once I was diagnosed, everything about my treatment changed, because your typical one size fits all Eating Disorder treatment just does. not. work. for. me.

My first time in treatment after the Autism diagnosis, my wife created a document called How to Meesh for my team, which included a psychiatrist, a therapist, and a dietitian, so they’d have a better chance of success in working with me.

I thought I’d share it with you, as it’s a kind of interesting look into my brain, and it also shows how much eating disorder treatment needs to be altered to ensure the success of autistic patients.

How to Meesh

Meesh is very literal.  She will take the most literal meaning from anything that is said to her, and does not catch many non-verbal cues or implied intent.

This means:

  1. Please try to speak in complete sentences or phrases. She gets easily lost when someone talks for an extended period of time, or does not make a clear point.
  2. Be blunt /get to the point – She does not catch subtle hints or direction.
  3. Please be prepared to ask a lot of questions! Meesh does not often volunteer information, and does better with directed questions, and help making plans or lists.
  4. Please Listen! If something is bothering Meesh enough for her to bring it to your attention, she will be very frustrated if she feels like she wasn’t listened to or heard. One of the things she has worked on since her last ERC stay is “using her voice” but she still has a very hard time expressing how important things might be to her. (Jess will reach out if Meesh has tried, but there is a problem that isn’t being addressed)
  5. If you want her to do something, she needs you to clearly tell her your expectations.
  6. Tasks and goals that are general or broad tend to confuse her, she needs them broken down into individual steps or actions, otherwise she will not understand how to do what is being asked.

WORDS MATTER!

“Are you willing to?” Instead of “Do you want to?”

Meesh will respond to the literal meaning of words like “want to” or “willing to”.  This often means asking her the same thing multiple times, if someone starts asking if she wants to do something (this generally has implied intent), but you will get a better answer asking if she “will” do something, because she rarely feels that she “wants” to do things that she finds unpleasant or tedious.

“Experiments” instead of “Challenges”

We have found that rather than talking in terms of “challenges” to behaviors or meal plan changes, Meesh responds really well to “experiments” and the idea of setting up a scientific-like approach to trying a new strategy or approach a couple of times and reporting back on the outcome.

“Impressed” instead of “Proud”

Meesh does not seek much approval from others, and she has a negative reaction to people who congratulate her or tell her they are proud of her for things that she doesn’t believe are actual accomplishments, like doing things that are part of her normal daily expectations from her team.

Signs of overstimulation:

  • Stims like rocking, shaking head, saying “no no no no no”
  • Jumping at every noise (hyper alert)
  • Can seem completely unaware of her environment.

 

First Line Solutions:

  • Leaving the room if a group of people is too noisy or otherwise contributing to her sensory input in a negative way.
  • Music through her headphones.
  • Ice pack on chest or neck.

If first line solutions aren’t enough:

  • Dark quiet room
  • Weighted blanket or lap pad (she has a lap pad with her)

If Meesh isn’t given the opportunity to avoid overstimulation, she will have a meltdown, which can involve crying, yelling, extreme sensitivity to touch and sound, and can possibly result in self harm.

For Meesh – Anxiety and Overstimulation are sometimes linked.  If her anxiety levels are high, she has a tendency to be more sensitive to sensory input, and can become overstimulated.

Autism vs. Anorexia

Autism

  • Sensory issues with touching foods that leave anything wet or sticky on her hands when she is unable to immediately wash it off. (This makes sandwiches and wraps challenging). This also leads to her using her napkin to clean hands after each bite if she is trying to use her hands.

 

  • Foods with “grainy” textures are very problematic – for Meesh this means foods like applesauce, couscous, gritty sauces, multigrain bread.

 

  • If the food (in treatment) is not what is scheduled, she will refuse to eat it, or melt down, possibly both.

 

  • Repeated foods, meaning having the same thing twice on the same day, is very difficult for her, even when not struggling with the ED.

 

Eating Disorder Related (there is overlap)

 

  • Some of the food related rigidity is ED related. However, she does have a lot of texture related preferences that are more Autism. If she’s talking texture, it’s less ED related.

 

  • Precise attention to time of meal. She will only allow a 15 min variation from the “scheduled” start time of a meal at home, or she will skip the meal.

 

  • Obsession with the idea that food “artificially affects her weight” because food has mass, and by eating it, she is adding that mass to her body.

 

We implemented these during my last stay in Higher Level care, and it was incredibly successful! I left Higher Level care in August of 2016, and I’ve been completely Outpatient since March of this year. Recovery with Autism is still challenging, but I’m stable right now, so my team is happy. And so am I!

I’m basically an Autism and Eating Disorder expert at this point, so if you ever have any questions, please contact me, and if I can’t help, I can help you find it. Eating Disorders are serious business, and there are more than just Anorexia and Bulimia. Binge Eating Disorder and Avoidant Restrictive Food Intake Disorder (ARFID) are just as deserving of help and recovery.

The National Eating Disorder Association (NEDA)

BEAT Eating Disorders

Stim The What? An Origin Story

If comic books have taught us anything, besides the fact that not everyone can pull off spandex, it’s that everyone, hero or villain, has an origin story. I don’t think it’s a coincidence that the majority of these characters come into their powers, weaknesses, and world views through some sort of trauma. Bruce Wayne becomes Batman after his parents are killed in front of him. Magneto survived the Holocaust and because of that, makes it his mission to be the aggressor so he would never have to experience being oppressed again. Good guys and Bad guys are defined by how they handle trauma, and that’s what makes comics so universally liked. Ten people could be in the exact same situation, and they would handle it ten different ways. I relate a lot to comic books, they make a lot of sense to me. I think that everyone has an origin story, whether they’re a hero, a villain, or an extra. While I’m likely an extra in the grand scheme of the world, I’d like to think that I’m the hero in my own origin story; and I’d like to tell it to you. In the interest of time and attention span, I’m not going to start at the beginning. I think I’ll start not at the beginning of my life, but at the beginning of where I am now. Picture it: New York, 2014.

Our story begins in an apartment in the Hudson Valley, in New York. See the person sitting on the couch covered in cats? That’s me. And to be honest, I’m in a pretty rough place. I’m tired, and confused, and lonely, with no direction, and very little hope that things will get better. I haven’t held a job in several years (future me wishes that I can create a wormhole and leave myself a note to google Autistic Burnout), and it’s weighing on my self-esteem. Even though the estrangement from my parents was my choice, I am still missing the idea of them, and while my in-laws are nice, they still don’t feel like family yet. At 26, most of my high school and college friends have moved on or moved away, and since I lack the small talk gene, I haven’t really made any new ones. And on top of all of this, I’ve developed a chronic illness that frequently leaves me couch bound. I love my wife and I love my cats, but I’m isolated and unsure how to resume living my life. Also, I’m starting to have a strange niggling feeling about my body that I can’t place (spoilers: Dysphoria!). So to sum it up, I hate my life, I hate my body, and I hate everyone else because I can’t have what they have. Hm. Now that I write it out, I’m definitely started to sound more like a villain. Guess we’ll just have to keep moving forward and see what happens.

The more miserable I get, the more I start to slide back into old behaviors. Self-Harm, Food Restriction, and Intense amounts of exercise seem more and more like valid ways to deal with my problems. My brain sees these as the acts of a hero, I’m hurting myself instead of hurting anyone else. Because c’mon, everyone knows that heroes are all about self-sacrifice. And besides, doing these things make me feel better. A part of me knows this isn’t a good excuse, but it’s easy enough to silence that part. So what if my hair is falling out and I’m covered in bruises? I no longer cared that I couldn’t live the life I wanted because I had a life of counting and pacing and ignoring that fact that I was different. Also, my boobs went away, which mostly solved the dysphoria issue. Win win. Soon to be lose lose. Lose because I had a brief glimpse of what was actually happening. I tried to suppress my inner villain and I quickly learned that I couldn’t. So I did the hardest thing, the truly heroic thing. I asked for help.

In eating disorder treatment programs things are often presented as very black and white. You are good, your Eating Disorder is bad. Good, bad, hero, villain, these are gross simplifications of mental illness, and of life in general. At this point in my life, I knew what Autism was. How I had never considered it might apply to me, is still kind of a mystery. This is relevant because my autistic traits were looked on as being very negative, by the staff at my first treatment center. My food issues were me being stubborn, my poor social skills were often got me labelled as aggressive. My intolerance of change made them tell me over and over that I clearly wasn’t ready for recovery. None of these things were true. I was there for almost a year. Eventually we came to a mutual agreement that I needed more “complex” care, and that I shouldn’t come back. I consider what happened after that to land me solidly in the hero category. I could have given up. I could have said screw this, clearly I am not meant for recovery, I’m done. But I didn’t. I accepted change, I was flexible. I drove 800 miles, 800 miles from my wife and my cats (remember them?) and I started again. At a place who worked with me, who were able to see my behaviors as something more than stubborn, and staff who knew what Autism looked like, and how to work with it. Now, I wasn’t given special treatment (that would have been a total villain move), but they provided me with tools that gave me the best shot at recovery.

“I’m just a soul whose intentions are good”. I’m in recovery. You probably guessed that though. I still think that I fall into the morally gray area when it comes to my Autism and my Eating disorder. I’m stable, but sometimes when I’m in distress, self-harm behaviors pop up. I follow my meal plan, but occasionally I fall into the hole of routines and textures and sameness and I don’t follow it as well as I should. The correlation between Anorexia and Autism is high, although no one knows why. The Correlation between ARFID and Autism is even higher. When I started this blog, I called it Stim the Line, because I often feel like I’m walking the line between Anorexia and Autism, that most members of my team know about Eating Disorders or Autism, but not both. I wanted a place to examine that line, and to connect with others who walked similar ones. I may be a hero, but I know now that Autism is not a villain. Neither is my Eating Disorder, although falls more into the trope of ‘villain but for a good reason’. Both the Eating Disorder and the Autism influence who I am, and I’m still finding a way to take the good influence and leave the bad ones. I’ll probably be doing that for the rest of my life. But it’s my life, and I’m working to make it into something that I’m satisfied with, and maybe even proud of. And that’s why I’m a hero.