Saturday, November 5, 2016

This Might Help With Depression

Okay, so I've tried St. John's Wort (an herbal SSRI) and I've tried multiple SSRIs and SNRIs and I hate the side effects of every last one of them. The weight gain and metabolism slow-down are bad enough, but add into that the fact that they didn't actually lift my depression, they just made it so I didn't care. I felt wrapped in fuzzy cotton.

After I tried getting off of them completely, and without having anything anti-depressant in my system realized I did need something, I did some reading.

I want to share what I found, but I also want to warn you: this isn't going to work for everybody. It might not work for you. And this isn't woo-woo stuff, if you're looking to go anti-science. It's based on science and how the brain works.

So first, a little primer in brain chemistry. (If this is your field, and you are aggravated by certain things I've simplified or glossed over, I'm sorry. I was trying to make this understandable. You can leave comments if you want.)

Your brain communicates through the nervous system. Millions of nerves. Each one is a neuron. And they don't actually connect end to end. There's a tiny (very tiny) gap between each one and the next. If the nerve wants to communicate something to the next nerve, it sends a neurotransmitter across the gap. The receiver nerve accepts the neurotransmitter and then trashes it. Kind of like sending someone a letter and they read it and then throw it in the trashcan.

A neurotransmitter is just a molecule. It's a big molecule, though not as big as some, but it's pretty big (no, you still can't see it!). This is important later.

A SSRI or SNRI is short for "selective serotonin/norepinephrin reuptake inhibitor". What it does, it prevents the nerve from throwing the neurotransmitter in the trashcan. It put it into the "recycle bin" of the brain where it can be used again.

This is based on the hypothesis that depression is caused by a shortage of the appropriate neurotransmitter. Some people lack serotonin, some lack norepinephrine, and some lack dopamine (Wellbutrin is the only dopamine helper anti-depressant that I know of). This is a widely accepted hypothesis that seems well-supported by the clinical evidence. In other words, you find the neurotransmitter you're short on, make your brain have more of it, and your depression is reduced or lifts.

My personal unproven untested hypothesis is that the side effects are because your brain is trashing the neurotransmitters for a good reason. Maybe they lose one tiny hydrogen off the middle somewhere and become a problem. Whatever; you're supposed to use a new one every time (like a salad bar and the plates).

So, why the drugs? Why can't you just put dopamine into a pill and take it?

Remember how I said the neurotransmitters are fairly big molecules? There are nerves outside the brain, but for the ones inside the brain, the brain makes those molecules inhouse, so to speak. There's a blood-brain barrier around your brain (because brains don't have blood inside them, just on the outside) and it stops any big molecules from getting through. This is to stop (most) viruses and bacteria from attacking the brain. They're big molecules and can't get through.

But little molecules can make it through, like oxygen (which is oxygen-oxygen, O2 technically, and thus a molecule made up of two atoms).

And the building blocks that the brain uses to make neurotransmitters can get through as well. The brain is very efficient. It uses building blocks in many different brain molecules, without having to have a specific set for each one. In other words, if one of the building blocks is red, it can appear in multiple types of brain-manufactured molecules. Red-Green-Blue, Red-Blue-Blue, etc.

So. Idea. What if you took the building blocks in a pill and flooded your system with those? Would your brain make more of Red-Green-Blue simply because it had more Red, Green, and Blue available now? Perhaps some kinds of depression are simply because the building mechanism is slower than normal for that neurotransmitter?

Dopamine is made of an amino acid and two vitamins. It's phenyalanine and two of these three: B2, B1, B6. (I don't actually remember.)

I tried taking phenylalanine and a balanced B-100 formula vitamin (100 mg of each of the 5 major B vitamins)(which is why I don't remember which of those three it is). I took 2 of the 500 mg L-phenylalanine pills. This made me feel better (less depressed) but not quite enough, so during the summer I take 2.5 of the 500 mg L-phenylalanine and during the winter go up to 3 (to combat the Seasonal Affective Disorder).

It has to be L-phenylalanine, as the D- version is useless to the human body. (You can buy these in L- only or DL- and the DL- is cheaper because they didn't have to separate the two.) The human body uses the left version only. I've also found that only Source Naturals brand works, but your milage may vary and it's not like I tried anything but the Vitacost generic brand as an alternative.

Now there's always the placebo effect, which I will grant you. But my sample set (the number of people I know doing this where it works for their depression) is greater than one, it's (tada) two. My brother also does this, and it works for him. I think he has to take 3 or 4 of the 500 mg tablets, which would make sense given his larger weight. (He's a boy, I'm girl, so yes, he weighs more than me. He's also taller.)

Before you run out to try this, WAIT.

I'm not a doctor. I'm not even a biology chemist. I'm just an analytical chemist and I don't work in this field. So, I can't really recommend anything. But I will say you need to be careful. This is your brain you're screwing around with.

I'd say, "Get off the anti-depressant you're currently on before you try this" and "do that part slowly." I'd say, "Make sure your doctor knows what you're doing. Their eyes may have this 'huh?' look, so you probably should add on the end, 'it's like taking Wellbutrin'."

I'd say, "Make sure you keep an eye on yourself and your symptoms, and if you feel like you're getting worse, get back on your normal anti-depressant immediately."

And definitely, if what you're taking right now works for you, don't try this. Honestly.

The side effects I have noticed are: a feeling like an extended adrenaline rush. This means you're taking too much and back off a pill.

The other side effect that is long term is a certain lack of ability to access the word you want to use. This is mostly just annoying for me. I'll come up with words that are close but not quite what I wanted.

For example, I've said that I had to "put new shingles on my ceiling." I've referred to my brother's driveway as a parking lot, although in my defense there were six cars in it at the time. (But I wasn't trying to be funny and the word I wanted to use was driveway.) I've said "thank you" instead of "you're welcome."

So, for dopamine (what I do): L-phenylalanine + one Balanced B-100 mg vitamin.
For serotonin: melatonin + one Balanced B-100 mg vitamin.

No matter how many of the L-phenylalanine tablets you have to take, you only need 1 of the Balanced Bs.

I can't supplement serotonin. Look up serotonin syndrome if you're actually wanting to know why. Point being here, I haven't tried that version of this method personally so I don't know if it'll work.

To wrap up: if you try this, please be careful. I don't want anybody to get hurt. There are people who can't supplement phenylalanine, and if you are one, don't try this (please say that was obvious).

Unlike a prescription antidepressant, you should notice within a day if this is working for you. (If it's not, add a pill; if that doesn't work at all, give up on this method. If it feels "a little better" add a half a tablet more. I wouldn't think you should go above 4 of the 500 mg tablets unless you're a really large person (we're talking 300 pounds or more). Start at 2 tablets and work your way up by half a tablet.

And unlike a prescription antidepressant, there is no carryover effect. You have to take this every day.

Time of day: since dopamine is an "activator" neurotransmitter (wakes you up, sort of), take it in the morning. If you are trying the serotonin version, take that at night, as serotonin is a "calming" neurotransmitter (it comes from melatonin after all!)

Please be careful and please be aware that these aren't "harmless" because you found them in the vitamin aisle.

Tuesday, September 13, 2016

Shatter Me

I figured it out.

You know how a windshield for a car is made? It's a sheet of glass sandwiched between two pieces of very strong plastic. If a rock hits your windshield while you're going 80 mph, even if it punches through, the plastic will hold the shattered glass in place until you get it replaced. (Which you had better do soon if the rock actually made it through the windshield rather than just shattering the glass.)

This keeps the glass from flying inward, in deadly shards, at you. It keeps you safe.

But no matter what you do, you can't fix the glass afterwards. You have to replace it. If you keep driving with it (say it's only a star-pattern crack in the glass) the glass will continue to break. Worse, it'll wear at the plastic from the inside, scrape scrape scrape.

People aren't windshields. They're supposed to heal.

I don't know how.

Pippin's death shattered me. All through and through. But the "plastic" kept me looking mostly intact. I mean, people could tell I was hurting, but nobody could see just how bad the damage was. Nobody understood that only a thin shell kept me together.

Since then things just kept getting worse. Daddy had a seizure. Scary, terrifying, to see him in the hospital afterwards, unable to remember from moment to moment, and certainly not the strong, capable, emotion-rock of my life he had been.

One of my uncles died, rather unexpectedly. I really liked him, too. He was one of the ones that was "friends" with me (if you can call us friends when we didn't see each other for years at a time).

My company decides to sell my part of it to someone else. Now we're in the middle of the transition to the other company and everything's changing and nobody's communicating. (We found out the hard way that the new badges will only let you in the door during a certain time period around your "schedule." Luckily it wasn't me personally that got locked out, but I add this so you realize just how badly nobody's communicating.)

I develop a lovely eating disorder where I can't just eat more (because it's not anorexia) and I can't just eat normally (because I don't know--apparently, I've been doing a mild version of this eating disorder all along).

And I get "burning tongue syndrome" on top of it, a condition where they don't know what causes it, what makes it go away, or if it will ever go away short of my death. So I'm now in constant physical pain, too.

I think the plastic's wearing thin. I'm starting to feel the shards.

And I don't know how to heal. I don't know what I'm doing wrong that I'm not healing.

All I know how to do is put my head down and keep going forward, in the hopes that something, somewhere, will be better. Easier.

Thursday, September 8, 2016

Why Can't You Be Normal?

Bear with me, this is going to get long (I have a brevity deficit).

Let me tell you a story. So there's this woman in a wheelchair. She's paralyzed from the waist down. She's trying to go shopping and there's a big crowd of people and she's in the way. One of the people in the crowd says to her, "you look perfectly fine to me. Stop pretending you need that wheelchair and get up and walk properly."

She explains politely that she can't; she's paralyzed.

"Oh no, you look just fine. That person over there, with no legs? Now she needs a wheelchair. You're just being lazy. You just need to try harder."

It so happens that our girl has crutches slung over the back of her wheelchair to help with little short "jaunts" (like from the chair to the bed) and she gets these down and tries to walk with them. For a moment, she does just fine, but soon she gets tired and falls down.

People in the crowd mock her; some of them call encouragement to her. A chorus of "you can do it, just try harder," and "stop acting like that, you know you can walk just fine, you just need to stop being so entitled." "You look fine to us. Get up and walk."

And with all this coming on her, she convinces herself that there's nothing really wrong with her, and she could walk if she just tries hard enough. It would certainly make her life easier in many ways, so part of her even wants to believe.

She tries and she tries. She tries every way she can think of. She takes all the suggestions they can give her. But still, she can't walk like they can. She can only drag her paralyzed legs along for a few steps with the crutches before she falls. The wheelchair works better but gets in everyone's way.
Okay, by now I'm sure you've seen the point of the story, but let me ask you this: what do you think of the people in the crowd? Was it okay for them to tell her "you look fine, just try harder?" What about the ones that were genuinely trying to help, and be encouraging? Was that okay? Or is telling a paralyzed person that they aren't, that they can act perfectly normal if they want to -- is that wrong? Isn't that bullying?
Autistic people are like the woman in the wheelchair. Our brains are _different_. No amount of "trying" is going to change that. Now, just like the woman in the wheelchair, we can use "crutches"--which would be learning social behavior by rote (like memorizing a multiplication table)--for a while, but it's exhausting to do and eventually, leaves us on the ground in a heap if we don't take a break.

Oh, and the other woman, the one with no legs at all? She's like a person with Down Syndrome; someone who has neurological differences that are physically visible to "normal" people. Nobody tells her that she just needs to try harder, because it's obvious to them that she is different. But people with autism most of the time look just like the "normal" (neurotypical) people do. So they, _you_, get judged as if you are a "normal" person.

NT people have this social behavior they expect everyone to conform to, but very rarely will you find anyone who does. They are just as hard on each other as they are on you. The problem is, you're not doing what you do because you're choosing to break the rules. You can't learn the rules the way they do. Your brain is simply different than theirs.

Please, be kind to yourself and let yourself stop believing that "you should know how to behave around people" and "there's no excuse." Imagine what you would think of someone telling that paralyzed girl "you should know how to walk" and "there's no excuse for acting like you need a wheelchair."

(I initially wrote this in response to someone who said (online) the two initial quotes in the last paragraph. Unless she tells me differently, her identity will remain anonymous. I just didn't want to take credit for the words that inspired me to write this.)

The Wall at the Edge of Hell

The Wall at the Edge of Hell

I've been through hell 
These past few years 
I'm saving my strength 
To get out of here 

When I see that wall
Stretching up so high
I'll climb right on up 
Reaching for that blue sky 

Sh, I've a secret
Sh, don't you tell
You'll never get out
Of your personal hell

The ground: it's a quagmire
The wall: it's slick jade
The sky's pretty now
But soon it will fade.

Hush, it's all right now
Hush, don't you cry
There's no one to hear you
No one to care why.

Determined and ready
I will reach the top
And when I get out
I'm not going to stop

You mean you don't know?
You mean "ya dinna ken?"
At the top people wait
To shove you back in.

No one wants the reminder
That hell is so deep
That one could open up
Right under your feet

And so they pretend
That there is no night
And please don't remind them
It isn't polite.

<I wrote this a few days ago. Obviously I was not feeling particularly optimistic.>

Wednesday, August 3, 2016

Brain Full of Fish

My brain feels like a pond full of brightly colored fish, swimming so rapidly around and over and under each other that I can't see a pattern, I can't follow their movement, it's just an endless swirl of meaningless color and movement. It's very disconcerting.

The fish are facts. And questions. And fears. And emotions and a bunch of other things I can't even identify.

Today at work, we met with the company representatives from the company that is buying the part of my company where I work. Most people where I work got job offers, me included.

So why am I not head-over-heels happy? I still have a job, after all, even though I'll be making less money once all is said and done (and I am struggling a bit financially right now, before I make less money). Also, head-over-heels is an inappropriate term for me to use considering I've never done a successful cartwheel; the most I ever managed was head-over-teakettle (meaning I got halfway onto my hands and everything just flopped out all over the place, usually hurting myself). 

I guess because there are so many questions left unanswered. The sale completes this weekend, and until then, they can't really tell us a lot of stuff. And I've got to make decisions on which version of their health insurance I want to go with (or do I want to continue my current plan at COBRA rates until the end of the year); and this is a major decision that you can't just change on a whim. And yes, it's great I will have health insurance.

Just so many options, so many questions, so many things going around and around in my head. I'm experiencing information overload and honestly, I don't want to deal with any of it. I just want to sit and stare at the wall and pet my cats.

I discovered something weird, though. If someone asks me a question, say, "what's the specialist copay for the more expensive plan" I can retrieve that fish, I mean information, and tell them. But then the fish goes back into the swirling, incoherent pond and I can't get that information out for myself.

Time will tame the fish. I've been through these things before. I just don't know if I have enough time before I simply make a decision without enough of a knowledge base to do more than randomly pick one.

I hate overload.

Sunday, July 31, 2016

The Mysterious Case of the Disappearing Friends

In my life, I've had people that I considered friends. They were people I went out with, to the movies, to their house, to restaurants. In one case, it was a coworker who helped me go shopping for grownup clothes back when I first started my job. She also went to the movies with me a fair amount, and occasionally lunch. In another case, in college, she invited me over to her house and made pizza together (that was fun, but also weird because she didn't have allergies so she didn't run her furnace fan all the time to clean the air, which meant her house was oddly silent). We traded books to read and had lots of talks.

You get the idea, right? I mean, it certainly looked like friendship. They willingly spent time in my company, just with me, and did so repeatedly.

Yet I must have been missing something. Because each of these people just vanished out of my life one day.

The co-worker took medical leave from work and never came back. Never contacted me. Didn't make a single attempt to maintain what I thought was a pretty good friendship. I didn't have her email or phone number, and it was over a year before she got officially let go, and I'd just kept hoping she'd be back soon.

The college friend vanished even more abruptly. Her email address went dead ("undeliverable"); her car, a very distinct bright yellow 1950s type convertible, was no longer around (and I used to see it a lot, just on the road, randomly, as we went to the same places to shop, albeit at different times). Her phone number just rang and rang.

I think perhaps something serious happened to them. Maybe something dreadful. Kidnapped, or mental breakdown so severe she couldn't remember her friends from before.

And then I think they just didn't like me. That they took the opportunities they were given (leaving work; maybe moving somewhere else) to cut all ties with me, instead of telling me straight up that they didn't want me hanging around them any more.

I can be a very clingy friend. I try not to be, but then I'm afraid I come off as distant and uncaring. I don't seem to be able to find balance in many things in my life, and friendship is definitely one of those unbalanced sort of things.

And sometimes, when I haven't had enough sleep and I'm truly getting paranoid, I wonder if the college friend even ever existed. (I know the coworker did. I've mentioned her name since she left and had people know who I was talking about. And yes, I did it to make sure she, at least, was real.) But I don't know anybody else who knew my college friend.

I don't even remember her name now.

Isn't that a creepy thought? That I could have made up a person and believed so truly in what I made up that I don't even know if she's real or not? I probably should not have watched that movie, A Beautiful Mind, or I wouldn't know that sort of thing was possible for the human brain to do to itself.

I wish I knew if other people had friends just vanish. No note, no good bye, no "I got a job in California we'll keep in touch" and then don't (the keep in touch part).

Sunday, July 3, 2016

What Do You Do After You Get Everything You Ever Wanted? -- Ramblings on Grief

Trigger warning: If you've lost someone recently, or the grief is really bad, you might want to go away now.


By the time I was 31 I had everything I'd ever wanted. Mainly because I had never been one to dream big. I wanted attainable things, and I got them.

I had a beautiful (both character and body) cat friend who I loved very much who loved me back. I had my parents, married happily to each other for most of their adult lives, who I loved very much and who loved me back.

I had a good job making enough money to buy what I really wanted (as opposed to "it would be nice to have that") and I'd had the same job since I graduated. (I really like stability and routine ... part of the autistic me).

And now I had a house, of my very own, that I was paying for over time (like a normal person!). I was not a burden on society. I was not institutionalized despite the many chronic, silent diseases I had (still have--and now I have more of them). A pretty little house in a good neighborhood with nice people on my street and a yard just the right size, not too small, perhaps a little bigger than I wanted but there was that giant oak tree in the middle of the back yard that I loved that would have been impossible with a smaller yard.

I had graduated from college and had a job in the same field I'd studied in.

I had a small group of friends and we met every week to play board games which I loved doing and loved being around them.

And this, dear readers, is everything I'd ever wanted. Friends, family, financial stability, independence, and love. (No, not romantic love. I'd never wanted that, and still don't.)

They say thirteen is unlucky. It's unscientific. It's superstitious.

And in 2013, Pippin, my beautiful, loving cat died, and as if he was the linchpin that held everything together, my world was torn apart.

What do you do when you have everything you ever wanted? You watch it all get ripped away from you, that's what you do.

It's melodramatic. It could be worse. I mean, my parents are still alive, even though my dad had a seizure three months after Pippin passed away that left him in the hospital for a few days. (Medication induced, by accident). He's fine. He's his old self, although he's retired now so it's a different "old self" than the one that worked 40 hours a week and thought it part-time work since he was used to working 80 or more hours a week.

I still have the same house. There's probably mold in the walls that I caused by installing a whole-house humidifier and not using it responsibly ... I haven't had the courage to pay someone to come confirm my suspicions.

Even still have the same friends, who have put up with a lot from me as I grieved in agony, developed several more anxiety disorders, and changed in personality so much that they probably wonder what happened to the me they used to know.

My anxiety says they probably liked that person better. I don't even want to play the board games I enjoyed so much anymore. I do, sometimes, and sometimes I don't, and sometimes I don't even go.

Pippin was such a stable point in my life. He was someone I could love and care for in my own, smothering way, and he enjoyed it and thrived under such care. He accepted me for who I was, even if I was crying in great gulping tears over something my boss said to me that day. (I said I had everything I ever wanted, not that my life was perfect!) He was always there for me, a steady, constant presence in my house.

Even if I ignored him too much and stayed out with friends too much and spent too much of that precious, precious time with him asleep or watching tv or doing things that didn't involve him. He still loved me, loved any time I spent with him. At least I took him with me when I went on vacations, until he got older and it got too hard to figure out where to stay when I got there (most places aren't cat-friendly) and then I just stayed home.

It's been almost three years, and I still miss him. It still hurts. Sometimes it hurts just as much. And I had so much support from friends and family during that first, horrible year without him, where I had no one "in his place", that I hate to tell them that it didn't work. All that support, all that outpouring of love to me, all that you did. It didn't work. It helped only a tiny bit. I still need it. But I can't ask for it; I won't ask for it--that much support is exhausting to give ... for me to give to someone else, so I assume it's the same for them giving it to me--and it's not fair to ask for that kind of support years and years later.

It doesn't feel like it's been years ago. Despite having three (!) cats now, all of whom I love, I still miss Pippin like he was just here. A moment ago.

I wish I were a child again, where three years was ever so long and couldn't be comprehended, and it was only my birthday the next year that took forever and ever to get here. I wish time didn't rush by so fast. I wish it didn't hurt so much.

When in fact, it doesn't "hurt so much". I miss him. I feel torn apart inside. I feel quite a lot of pain because he's just not here anymore. But it doesn't hurt "so much." Because I remember what it actually felt like right after he died, in those first few months, and it hurt so much more than it does now.

And I wonder how I stayed sane. It hurts now, it hurts a lot ... but it hurt exponentially worse in those first months.

Of course, I'm writing a secret blog in a public forum, so perhaps the question of my sanity should be shelved for a while.

But I saw something today, something that is really true, that says it better than I can.
I understand now that with each death, each passing of someone you love, that grief is absorbed into who you are. It never goes away. It never stops hurting--unless you stop feeling anything at all, anyway. And it piles up, the pain of loss, the grief, each one layering on top of the other, complicating your personality, making it deeper, more complex, but more to my point, more full of pain.

I used to want to live forever. I liked shows and books about people who could. Immortals and vampires and so on and so forth. I didn't understand why all humans didn't hunger to live forever.

Well, now I know. Because if you love, and it hurts so much when the people you love die, and that pain never really goes away, then after a while, by the time you're old, you're ready to leave it all behind you. Who would want to keep living with all that pain?

And right now, it doesn't feel like grief adds layers on top of me, like someone piling on blankets until it smothers me. It feels like grief rips holes out of me. Big holes, little holes, depending on how much I loved someone, how much I knew them. My uncle died (unexpectedly) last November. I loved him a great deal but I didn't know him as a person very well. Now I never will.

What happens when there's not enough left of me to rip more holes out of? I guess I just have to keep creating more me so there's more to take; the alternative is to shut down and not love anybody, and although I considered it seriously during the worst of the grief for Pippin, I decided I wasn't capable of doing that. Yet.

Pippin ... he was a person, albeit four-footed and furry. He had a lovely personality. He had a great sense of humor and was very patient. He saw me as the strongest person in his world, and because I didn't want to let him down, I was that person for him.

Now I'm not that person. My companion cat people aren't grown up yet. They don't even know who they are going to be, much less who they expect me to be (other than someone to hang out with and love and be loved in return ... which is helpful but doesn't help me be a strong person emotionally).

Maybe one of things I miss the most about Pippin is his faith in me, his complete, unwavering confidence that I would always be there for him. And maybe that's why the grief is still so horribly raw when I think on it. Because I wasn't there for him. Not at the end. He had a brain tumor. Progression of less than a week. Severe symptoms less than 24 hours. He couldn't jump, couldn't stabilize himself, couldn't land. He couldn't be on the bed with me, where he slept every single night of his life. He died on the floor. As close to me in the bed as he could get. And I slept through it. I slept through it. I wasn't even there to hold him.

I don't tell people that part. I don't tell them that I wasn't there for him in the end. That he died alone. That I was callously asleep. I should have slept on the floor that night. I should have slept there with him. Even if I'd slept through it ... He could have been against me, felt my heart beating as his slowed and stopped. Had that one last reassurance.

But instead I slept through the night, waking up only once, to hear scrabbling noises, like he was shoving his head into the corner to put pressure on his temples (it helps headaches, which cats don't normally get and the tumor was giving him). That's where I found him, his head in the corner of the big jewelry box and the wall, lying there with his tail against the bed, on his side, one paw stretched out like he most always did while he slept. He wasn't in pain when he died. He couldn't have, not and been positioned in a "happy sleep" mode like that. But if only I'd gotten up when I heard him.

Before he died I used to cry at the drop of a hat. I tear up now, but I don't cry. I don't even remember crying more than three or four times for him. I just aimed all that grief, the loss, the anger, the self-loathing, the incredible emotional pain, inward at my body and soul.

I lost fifty pounds ... people fuss that I'm too thin now ... I call it Pippin's last gift to me.

I don't tell anybody that, either.

Yes, I've tried therapy. Multiple times. They don't get it. Worse than useless. I guess I just have to live with the holes.

Monday, May 30, 2016

The Accidental Anorexic or At the Intersection of Autism and Eating Disorders


Turns out I have been eating under the lowest recommended calorie rate (1200 for women) for many, many years, for the majority of most days of the week. If I'd been doing this intentionally, I'd be an anorexic. Nobody in the medical field wants to believe that someone can do this accidentally and still be overweight and relatively healthy.

But I don't have a good relationship with my stomach. When I was a kid, I joked that I had a cast iron stomach because I could eat anything. Didn't realize that my definition of "anything" was pretty limited, actually, and didn't include spicy food at all. Well, I didn't like spicy food. Why would I eat it?

Here's the thing though. I didn't eat because I was hungry, or because food tasted good. I ate food that didn't taste bad to me (there's a big difference there!) and I ate because I had to. My mom insisted on it. But she wasn't making me eat just to eat; she insisted on it because "you have to have food to make your body go." In other words, if I wanted to do stuff, to go anywhere and do anything, I had to have food.

So I ate. Rather reluctantly and out of habit. And that's the autism at work. I didn't have a good relationship with food and taste and my stomach simply because I don't have a good grasp on any of my emotions and physical sensations. I often get them mixed up, and rarely, even now, know what I'm feeling.

If my stomach feels "bad" I have two options: one, I'm hungry, or two, I'm sick. I've developed a plan based on experimentation. I eat something, and if I feel worse, then I'm sick and shouldn't eat more; if I feel better, then I was hungry. You already see how this is a problem. Sometimes if you're very hungry, eating a little bit can make you feel worse as your stomach says, hey, just getting used to being empty down here, what'd you do that for?! And if you're sick, you're using more energy trying to get rid of the infection, so you actually need more food.

Now that I have an official eating disorder (binge disorder, not anorexia), I have to eat no matter what my stomach is telling me, or what I think it's telling me anyway.

It's working better this way, to be honest. Last week I had a horrible stressful day and I didn't want to eat anything. I wanted to throw the whole bedamned food plan out the window and just not eat, do what I wanted to do when it came to food and not what I should be doing.

After all, people have cheat days, right? People have fasting days? Some people even have it as part of their religion. Just one day won't hurt. And I felt so nauseous.  I really, really, didn't want to eat.

But I did it anyway. Thank goodness for autistic routines. I've been doing this food "three times a day plus snacks" since January and it's been enough to trigger a routine. So it was honestly easier to eat what I'd brought to eat when I'd planned to eat it than fight the routine ... Even though I badly wanted to just skip the whole thing.

And by that evening, I felt much better and was glad I hadn't thrown over my recovery for one stressful day.

Because the autistic routines can be made to help you or you can be at their mercy, but if you're using one to help you and you break it, even for a moment, even for a day, you risk shutting the whole thing down. It's like part of my brain is a bratty child that if it can't have its routine, then I can't have that routine either. Ever again.

The biggest problem with therapists is they don't realize this. They don't understand what a powerful tool an autistic routine can be in recovery and they don't understand how incapable some of us are in understanding our feelings...even hunger. So they try to make us flexible in our eating choices (no, because to me, flexibility means "yes, I don't have to eat when I'm stressed, Whoo hoo!") and try to submerge the routines because for neurotypical people, "inflexible routines" rapidly become distressing to them.

Whereas to people like me, it's helpful, useful, and calming to have routines. I don't have to worry I'm going to make myself too skinny or too fat. I have my food routine and my calorie counting app to ensure that I'm eating enough even when stressed and not eating too much even when bored or happy.

I wish people who specialize in helping people with eating disorders could also sub-specialize in helping people who are autistic with eating disorders. Judging by the statistics I've come across in researching how to "make me better" (as far as the eating disorder goes), female autistic people have an awfully high incidence of eating disorders.

But I'm the in middle of it and even I keep discovering the interplay between the two. I just want someone to have discovered this already and put viable options out there, not just the stuff they tell neurotypical people to help them recover.

Humph. Also, I found out that resetting my metabolism is going to take probably a year at the least and I'm not even at the beginning yet ... You have to get back up to what your true maintenance calories are before you get to say "now I'm resetting my metabolism." So what, I'll have "recovered" by 2018? The end of that year?

And I think I will always have the "stress means don't eat" response ... Just like an alcoholic who hasn't had a drink in many years, but still can't go into a bar.

But hey, good news on the food control front: I had the opportunity to binge on chocolate chip cookies, homemade, my worst binge food, on a Saturday which is my worst binge day, and I had two. Two that were planned and in my calorie allowance for the day.

Am I Pretty?

You know, don't you. You know if you're pretty, or attractive, or cute, or handsome, or whatever adjective strikes your fancy as something you want to be.

But I don't. I have no clue if I'm pretty or not. I have absolutely no idea whether looking at my face gives people pleasure because they find it attractive or repulses people because they find it unattractive. I don't think I'm ugly, mainly because it seems like there are few truly ugly people (or at least, that I think are really ugly) and those people get uncontrollable physical reactions from others.

In other words, people flinch when they see a really ugly face but they control the reaction and try to pretend it didn't happen. Something along the same lines as when they realize that someone is missing an arm or leg and is wearing a prosthetic. That same wince and cover-up. People don't do that to me so I don't think I qualify as ugly.

Am I pretty, though? Maybe it shouldn't matter. I'd like to know, even if it doesn't matter.

But there is literally no one you can ask that question of and get a straight answer. I've thought about this (probably too much) a lot and gone through a whole host of people I could ask.

My mom. Nope. She's going to tell me I'm pretty (and probably add something about pretty is as pretty does, or something religious). She's going to think that I'm pretty because she loves me, and cares about me, and obviously, if you ask the question, am I pretty, you do not want the answer of "no" even if it's true.

Unless you're me.

My siblings. Nope again. Same reason as my mom, with the added confusion of sibling rivalry and teasing going on. No matter what they said, I couldn't trust it to be truth--they could be teasing me or just fed up with me that day and say "you aren't."

My friends. Well, of course they aren't going to tell me I'm unattractive. Your friends aren't supposed to say things like that. Even I've learned that. And, oddly enough, not the hard way, the way I learn most social interaction rules. So they're useless for the truth in this situation.

My enemies? If I could identify who was someone who truly disliked me vs someone who just doesn't care, even if I could, that's a stupid idea. They're going to want to hurt me. Depending how subtle they are, they're going to tell me I'm unattractive (no matter what the truth), or they'll tell me I am attractive but "let" me overhear them mocking me for asking the question later, and saying to one of their friends that they can't believe I asked such a stupid question but they just "didn't feel right" telling me the truth so of course they told me I was pretty.

People who don't know me and don't care? Well, it's a very odd thing to ask a random stranger. If it's a guy, they'd think I'm flirting, and say I'm pretty so I keep flirting with them (given that we've already established I'm not ugly). If it's a woman, it kind of depends on what kind of person she is and how her day has been; if she likes to cut other women down or build them up; if she's under a lot of stress, etc. But most likely the answer will be that "you're pretty" because everyone knows that telling someone she's not pretty, especially if she's acting all vulnerable and childlike by asking you directly, is a good way to really make someone's day very bad. And most people don't want to make you feel bad--not if they're total strangers.

So that's it. All the different groups of people I could ask. And not a single one could be trusted to tell me if I'm actually attractive or just okay to look at.

And why don't I know? Everyone else seems to have a good idea if they're attractive or not. Is it because of the prosopagnosia, that I can't remember my own face once I turn away from the mirror? I don't seem to repel my own self in the mirror, but that just could be because I'm used to me.

Or is it something with the autism, making me not able to see a physical worth judgement that my culture holds dear but I don't understand?

In any case, sometimes it bothers me. Like a tiny hangnail, so tiny you forget which finger it's on when you actually get to a location with a nail clippers. Just a little bit.

Am I pretty?

Sunday, May 22, 2016

Disaster at the Post Office

It's been one of those horrid weeks were everything just piles on top of everything. Because I had to take Colby to the vet on Friday, I hadn't been able to get enough done at work, so I had to come in on Saturday (not a normal work day for me), and because I had to come on Saturday, I also had to fit in a visit to the post office and grocery shopping. The post office was before work since it would close by the time I left.

I only had one package to mail, something I'd promised to mail by that day on I also had potentially a friend's birthday that night and nothing purchased for them. And there, at the post office, like a lifeline from a friendly rescue officer, was a gift card display.

And it had the restaurant gift card where she likes to go, and it was a "set your own price" gift card. Absolutely perfect.

So I tried to buy it while mailing my package.

And the system tells the poor clerk only after it runs my credit card that I can't use a credit card to buy the gift card (I always have before, although never at the post office, and not at Walgreens but there's a big sign on the gift card display at Walgreens letting you know you can't use a credit card but must have debit or cash). There was no sign on the post office display. I checked.

And then the stupid system won't let her cancel the gift card purchase, get this, because it already ran the credit card. It won't use the credit card for the payment, but it won't let you remove the item it won't let you buy.

I don't have cash. It makes me feel vulnerable and with four anxiety disorders (or is it five now? I've lost track) I don't need to do something that makes me more anxious.

And I don't have a debit card. I don't like them. I don't like my money going "poof" out of my bank account before I have a chance to verify the purchase. If I go home and my credit card receipt is wrong, I can go back and have it fixed and even if the store won't fix it, the credit card company will. The bank for a debit card? No so much.

There we were. The frustrated clerk. The line growing ever longer behind me. The confused and frustrated manager who came to help the clerk. The line growing ever longer. Time ticking away where I needed to be at work doing work things. And the other clerk, yanking out a cash bill from her own wallet and saying, exasperation written all through her voice and body at the idiot who doesn't use cash or debit, "I'll buy it for my son."

I said "thank you." I apologized repeatedly to the people in front of me, the clerks and the manager. I didn't apologize to the people behind me in line because there were too damn many of them and that many people terrify me--what if one of them is the unreasonable, angry, violent sort?

I didn't want to say thank you. I wanted to say, "You should be able to cancel a transaction that won't go through, and if you don't know how to do it, get flippin' IT on the phone and make them work on a saturday just like the rest of us."

I didn't want to be forced to be grateful to a woman who only did it to get me out of there in the first place.

But I did, because that's social anxiety. Never stand up for yourself or what you believe in because there's always going to be someone more powerful than you, louder, angrier, more violent, more something, who will make you regret it.

So when I went grocery shopping after work to a place that would have taken my credit card for a gift card purchase and would have had that gift card, I totally forgot about it, because it was so late in the day.

And because it was so late in the day, and the birthday girl wasn't even going to be there until 10:30 so I'd just be leaving the card and gift and not actually seeing her anyway, and I was exhausted and frustrated and just so tired, I didn't even go to the whole shindig, just stayed home and slept through supper and then had to get up and eat supper anyway because of the stupid eating disorder where I can't skip meals anymore. No matter how tired I am.

The whole thing feels like such a colossal waste. I have to keep reminding myself that the whole reason I went to the post office in the first place, to mail my package, was actually successful and I did actually do what I set out to do, even though it took longer than it should.

Thursday, May 5, 2016

Not Going Back

I've been thinking about the visit to L-- (the registered dietitian and counselor) and I don't think I'm going back.

I had been leaning toward giving her a second chance, a chance to prove that she can stretch her thinking to encompass my autism in the aspect of eating disorders, but I have changed my mind.

I don't owe her a second chance. What I do owe is myself: I owe myself the kind of protection I would give my child if I had one.

L-- didn't listen, but instead strung together a series of catch phrases I uttered, put them together out of context, and came up with a cookie cutter diagnosis that doesn't even fit. (I sincerely doubt you can be anorexic without knowing what you're doing, and until I started using the app to track my food intake, I had no clue I was restricting my calorie intake as much as I was. How can I then be anorexic? Isn't the base of it deliberate calorie restriction for a variety of reasons (body dysmorphia, searching for control in an uncontrollable world, etc?) You can't do intentional calorie restriction if you don't even know you're doing it).

She wants to teach me how to eat naturally. IE, she wants to teach me how to eat the way a neurotypical person does, despite being told that I've never eaten that way in my entire life. An autistic person is going to eat differently--digestive and food issues aren't part of the diagnosis for autism but they are so common that perhaps they should be.

But I'd give her a second chance for all that.

No, where it breaks is my new special interest: food. She wants to take something that gives me so much joy, fascination, entertainment, and happiness and turn it into something shameful, a part of the eating disorder, something to be overcome and ignored.

No way in hell I'm letting her do that to me. I haven't had this much sheer, unadulterated fun with anything for a very long time. To a neurotypical professional like herself, I'm sure it looks like the obsession that's part of an eating disorder.

Special interests certainly are obsessive, I'll grant that. But obsessions that come with mental illnesses like eating disorders don't bring peace and joy into your life; they make your life worse.

And, simply put, I didn't start this special interest until after the binge eating was under control and no longer a problem.

So now I simply have to tell her.

*sigh*. Something that would be so easy for a neurotypical person and is so difficult for me. One simple, terror-filled, dreaded phone call. I hate phone calls; making them or receiving them.

Wednesday, May 4, 2016

Eating Disorder and Meeting a Registered Dietician

So today I met with L---, a registered dietician and a counselor/therapist specializing in eating disorders.

Now I know I have binge/starve disorder. The evidence is clear. I've been using myfitnesspal app to keep myself from doing it; from eating too little during the week when I'm stressed out from the social and sensory issues at work and eating too much on the weekend to make up for it. Since the beginning of the year I've been successful at doing this.

Mostly I just wanted to know how much damage I did to myself, how long it will take to recover, what my metabolism is supposed to be and how much I'm supposed to eat (calorie-wise) without gaining or losing weight.

She thinks I have anorexia ... based apparently only on my current weight and my extreme disinclination to gain weight. She didn't really listen to my explanations of why my weight is there (yes, it's a little underweight, but only when I don't have any water in me--I weigh myself every morning after I pee just so I have a steady baseline, but in actuality I weigh more than that). Or my explanation of why I don't want to gain weight (because I did, without realizing it, and nearly went obese because of that, and it's damn hard to lose weight the right way, without destroying your body, and I don't want to do it. I didn't have to do it this time because of grief and the nausea that caused, but that's what led into the development of the eating disorder.)

So she isn't listening to me.

I don't know if I want to go back. I don't know if maybe I should go back and try to explain. I'm not very good at standing up for myself against authority. I don't like disapproval and I don't like judgement.

And even I, blind as I am to facial expressions, caught her eye roll when I mentioned the app. You'd think an app like that would be a useful tool for a dietician. She thinks she can train me to eat "naturally."

Again, not listening to me. I did try to explain that my natural eating pattern is to eat when I'm hungry and not eat when I'm not, but that stress and anxiety make me not hungry when I should be, so I have no idea when I'm actually supposed to eat ... and this is my natural eating pattern because it's what I've been doing all my life.

But she didn't hear that.

Any more than other people hear what I say. I'm getting way too used to being able to babble without anybody paying attention even if they're supposedly listening. Nobody can repeat back what I said anyway. I really should just stop talking. Or at least stop talking so much. Where's selective mutism when I need it? (That only shows up when I'm dealing with major big authority, like a cop or a judge. When it's severely not helpful to be nonverbal.)

But that's another issue.

What I don't know is how to explain to L--- that she's trying to take my crutch away from me without letting what's broken heal first. She said multiple times "how would I feel about learning to eat without using the app / depending on the app / etc". Basically, I feel like to her, entering all her food in and eating that way would be intolerable so she thinks it should be to everybody and that I'm doing it out of what, desperation?

But really, for me, it's fun. It's like a game. I'm enjoying finding out how many calories are in how much volume of food. I'm having fun searching out new recipes and new ways of making old favorites that are healthier and lower calorie (so I can eat more and not be hungry).

See, during the week I'm not hungry and I get aggravated because the app is telling me I still need to eat food to compensate for my calorie expenditure. That's because I'm stressed from work (the aspects of being autistic in a demanding sensory environment that offers no consideration for it). But during the weekend, I'm starving, because my brain is used to fueling up during those two days of not being at work and thinks that this time, I won't have food again come monday and we'd better get it in now.

Four months of eating the same amount of calories every day, weekdays and weekends, do not compensate for 40 years of starvation rations during the week and over-consumption of calories during the weekend. Not to my brain, anyway. I do hope it doesn't take another forty years of eating equally to retrain my hunger signals ... I'll be 80 before I can count on my normal hunger signals to eat properly!

That's why I went to L---. I wanted her to tell me how long it'll take before it'll be easier. Before I can let myself eat what I want to on the weekend without having the very bad feeling that I'm wanting way too much. The app shows me that what I want to eat on the weekend is usually far more than I should be having ... not if I want to keep it balanced with the weekday.

Anyway, food and keeping track of it and learning all about it and making new versions of old favorites and finding new favorites ... it's become one of my aspie special interests. I used to like collecting books and dvds, but that lost its pull sometime last year. So I had this blank area waiting for a special interest to develop, and there it is, food and everything to do with it. Poof, like magic.

I'm even thinking about taking an online nutrition course, one of those free-from-major-college-like-Harvard courses. Not sure I want to study regularly though. I'm having too much fun doing this helter-skelter, in whatever order I choose.

I guess it's hard for a non-aspie to understand that. It must seem like I am doing this app out of a desperate search for something to keep me from gaining weight (thus her conviction of anorexia). Maybe I didn't emphasis the "not losing weight" part enough, or maybe a neurotypical person just can't be led to understand the utter fascination and fun a special interest gives an autistic person.

I have another appointment next week. They're expensive, and I have to file the insurance myself. Perhaps I will give this one more try. Maybe I can explain, sort things out. Maybe I can just get her to tell me what I wanted to know in the first place and let all the other stuff alone.

Still stings that she wouldn't listen to me, though. She did, however, say that it would be interesting and complicated (in a good way) to work with me due to how my autism intersects with the eating disorder ... so maybe she's willing to try to listen, especially if I tell her she didn't? People don't usually react well to that, though.

Sunday, April 24, 2016

How Not to Snap Someone Out of It

I'd had a long exhausting week at work, complicated by my boss's inept attempt to help me deal with my stress. (Let's put it this way: her idea of helping me was equivalent to someone helping you deal with the stress of driving home after a long day of work by taking away your car. You no longer have the stress of driving home, right?)

And I'd had to use every ounce of social interaction tricks I've learned over the years to persuade her this was a bad idea without telling her she was ... without negatively implicating her mental processes in coming up with the idea.

I haven't been getting enough sleep either. So when I got there for breakfast, I wasn't in a very perky, happy mood. I wasn't in a particularly bad mood, actually. I was just exhausted. And when I get that way, I get morbid (thank you, OCD).

There are only a few people I feel comfortable being myself around. Everybody else I pretend, to some extent or the other, to be someone else. Someone who is cheerful, who has a positive outlook on life. Someone who isn't struggling just to make it to the end of each day without getting fired, losing her house, her temper, or her friends by letting them see the real me. The one that nobody likes being around because it's depressing and you can't fix me so it's frustrating as well.

My parents are two of those people that I don't have to pretend with. That I can just be myself. So, after establishing that I'd had a long exhausting week at work and I was still tired, I ended up making a morbid comment about the stupid dogs at the foot of the hill they live on, who bark at you constantly as long as they can see you and the sound is physically painful for me, so it's really stressful.

And then, trying to lighten the mood a bit, I said something along the lines of, "wow, if I don't lighten up I'm going to be real fun to be around tonight at my friend's birthday party. I really want to go, but I'm just so tired."

"Don't worry about it honey, you have the whole day to start feeling better. You might even be able to get a nap in and that would help, right? Besides, even if you feel this way tonight, I have confidence in you. You can certainly hide your exhaustion and be a good mood person just for as long as the party takes. It's only a few hours, and I've seen you accomplish that for much longer. You've had plenty of practice. I'm sure you'll be fine."

Only it didn't happen that way.

Instead of going away feeling supported and having my confidence bolstered that I can do this thing, I left holding back tears and feeling a deep, ripping, tearing loss.

Because apparently, my parents are human too, and my mom got fed up with who I really am and decided to go off on me. She was harsh, and mean, and basically a less fun version of that song where the chorus goes,

Go and fix your makeup, girl, it's just a breakup, girl
Go hide your crazy and start acting like a lady
Cause I raised you better, so keep it together
Even when you fall apart.
(But this ain't my mama's broken heart).

So I left feeling like a complete failure, like I wasn't ever going to be able to get it together enough to be a pleasant person to be around at the party.

But worse, I've lost my mom. Oh, she's still here, alive. I still love her. I'll still see her. But I'm going to have to pretend around her, too. And since she and my dad are joined at the hip (which I love but it makes it hard to have any daddy-daughter time), I have to pretend around him, too.

When I said I only had a few people I could relax and be myself around, even if that meant being depressing and not-fun ... I kind of lied. Few equals 3, technically.

My mom and dad were my last people who hadn't demonstrated unequivocally that being myself around them wasn't to be tolerated.

Thus I've lost everybody. The only people I can be myself around are my cats.

And they cheer me up and make me want to be pleasant company because they respond by being even better company.

(I wonder why humans can't do that. If you're depressing and down and they can't fix you, they get exasperated with you and leave. If they think they've done a good job of fixing you, then they ignore you--"my work here is done"--and if you pretend in the first place and they don't feel compelled to fix you, then you're just part of the background. An expected behavior in an expected place.)


Hey there. If you're reading this, I'm surprised. I'm not advertising this or allowing my other blog to link to it ( if you're curious).

This is where I write out the dark side of being high-functioning autistic, having anxiety, pure-O OCD, an eating disorder, depression (yes, I know that one doesn't start with a vowel), endometriosis, so forth and so on.

This isn't a funny or cheerful blog, although I do have a morbid, biting sense of humor that's probably going to show up no matter what.

But I needed someplace to write out the problems that I'm having in my personal life, and the people in my personal life know about and read the other blog. I don't particularly want the fallout from them reading this. (If they find it on the net, then they must really want to know, and in that case, if they get their feelings hurt, then tough.)

So why am I putting this on the internet at all? Because I've read some blogs by some people in pretty bad places in their lives, and it's helped me. Sometimes it's just knowing someone else goes through the same things--anxiety in particular is very isolating. And sometimes their solutions (if they have one) are helpful. And sometimes it just helps to know someone's got it worse than me, even if I do feel ashamed for finding that helpful.