7 Things They Don’t tell You About Eating Disorders

Ok friends, listen up- it’s NEDA week, and as a person in recovery, I’m legally obligated to discuss eating disorders on social media. So stay and learn some stuff, or if you feel like staying isn’t a healthy choice for you, go do some self care- your mind and body will thank you for it.

Now that I got that part out of the way.

This week is National Eating Disorders Awareness Week, and it’s sponsored by the National Eating Disorder Association aka NEDA. We all spend this week spreading education and awareness, trying to reduce stigma, and sharing our stories. It’s a really positive thing.

I’ve shared parts of my story on here a couple of times before, and since it is List Wednesday, I thought instead I’d leave with you a list of X things they don’t tell you about eating disorders.

*I’d like to put out a disclaimer that all of these things are based on my personal experience, and everyone has their own unique combination of awful eating disorder stuff*

1. Your hair falls out: And it’s not just that. Your skin will dry and crack and bleed, your nails will split and crack, and your body feels like it will crumble at any moment. This was particularly difficult for me, because any sort of moisturizer is sensory hell for me, so I hard to make the hard decision of dealing with the sensory input, or letting my lips and knuckles bleed. I’m a little ashamed to say that I usually chose the latter. On a positive note, in treatment I learned that lotion bars are bearable to use. I wouldn’t say it’s a good experience, but it’s something that I can get through. Burt’s Bee’s chap stick is also ok, plus, it keeps me from one of my favorite stims: chewing on my lips.

2. Eating Disorders correlate with Autism: No one is exactly sure why, but the correlations between Autism and Eating Disorders is really high. There are a couple of theories. The first being genetics, which to me, makes sense. Both Autism and Eating disorders are genetically caused by a slew of different genes, and it seems likely that some of them could overlap. Secondly, social factors are cited. One of the biggest risk factors for an Eating Disorder is social isolation, and I think a lot of us on the spectrum have experienced that. Whatever the cause, the relation is there, and it becomes a big deal when it comes to treatment. The treatment center that finally got me into recovery was able to do so because they took the autism into account, and helped me individualize my treatment. This is not a common experience. More work needs to be done on Autism and Eating Disorders, and more professionals need to be educated to handle the them. Because it turned out that I wasn’t stubborn, I was Autistic, and that made all the difference.

3. You’re never warm: When your body is malnourished, it diverts energy away from what it considers to be ‘non essential life functions’, and one of the first things to go is keeping itself warm. Before I entered treatment, I took multiple showers a day- as hot as I could get them, just to try and stop my teeth from chattering. Three pairs of socks and four blankets could not keep my toes warm. I’ve never known cold like that (and I lived in Upstate New York, famed for its chilly temperatures), and I will do everything in my power to never feel that way again. I still love hot showers though.

4. Re-feeding is incredibly dangerous: It seems so simple, the solution to malnourishment is simply to start eating again- but it’s not as easy as that. Introducing too much food is more than a malnourished body can handle, and if it isn’t done carefully, the patient can get Re-feeding Syndrome. The symptoms range from seizures, to dangerous drops in insulin, to cardiac arrest, and to death. When I got Re-Feeding Syndrome, my phosphorous levels dropped to a dangerously low level, and no amount of supplementing could bring it back up. It did level out eventually, although the daily blood draws scarred many of my veins, which I suppose is a small thing in exchange.

5. It will make you a liar: I hate lying- mostly because my autistic brain took the ‘lying is bad’ thing that gets drilled into us all as kids waaaaay to seriously, but also because I’m terrible at it. And yet, I can always tell when I’m doing badly because lies start coming out of my mouth. Lies about mood, about food, lies that I didn’t plan on telling, but somehow managed to pop out of me. This messes with your relationships in a big way. Not only do you feel badly about lying, but people in your life stop trusting you. Even now that I’ve been in recovery for a few years, I occasionally get urge to lie. This is one of those things that takes a lot of therapy to work through. And goodness knows I’ve had a lot of therapy.

6. You can lose height: That’s right, I said not height, not weight. Eating Disorders are hell on your bones. The lack of calcium makes them soft and brittle, which does more damage than you’d think. While I’m lucky that I never broke any bones, like a lot of people I knew, I still did manage to lose 3/4 of an inch somehow in recovery. In my case, they think it was less of a bone issues, and more of a problem with the soft pads that cushion your spine. If those get dehydrated (and I was definitely dehydrated), they deflate, just like a balloon, and your spine shrinks down. Lucky for me, after many months of drinking water like a fiend, they plumped back up, and I can proudly say that I’m back to my previous 5’7″. Which is good, because it turns out that I’m very attached to my height.

7. It messes with your poop: We’re all adults here, so I’m not embarrassed to talk about how an Eating Disorder can affect your poop. So it turns out that your bowels are a use-it-or-lose it organ, which I feel is something that should be common knowledge. But the fact of the matter is, that if your large and small intestines aren’t regularly used to push food through your system, they stop being good at it. Which can only mean one thing: constipation. Now constipation is pretty normal when a person is re-feeding- your body’s getting more food than it’s used to, and it can’t handle it. Usually this goes away. It may take a couple of months, but most people become regular again. Not me. I don’t really poop on my own. Multiple times I’ve gone to the doctors in intense pain, only to have them tell me that I am literally full of shit. And I think I’ll leave you at that.

So I tried to keep most of this as light fun facts, but as we all know, Eating Disorder are not fun. They’re incredibly serious, and sometimes life threatening, and anyone experiencing one deserves help. I’m going to leave the NEDA helpline at the bottom, and a link to their screening tool. If anyone has questions about Eating Disorders, treatment, or anything else, my email address is in my About page.

NEDA Helpline: 1-800-931-2237

NEDA’s Eating Disorder Screening Tool

Also, a dear friend of mine is heading up a great project that’s trying to change the way that we talk about mental health. Check it out over here!

 

6 of My Favorite Board Games

So we all have special interests, right? Those things that capture us and enchant us, they draw us in and they even make us seem obsessed to other people. Right, exactly, those special interests. I know that when I have a special interest, I want to talk about it. Which is usually fine, but is sometimes problematic, like when you’re eight and all you want to talk about it the Holocaust. That freaks people out a bit. But even if our special interests aren’t a weird, topic, people eventually get kind of tired of us talking about it. Which, thank goodness, is what the internet is for!

I’m here to talk to you about one of my current special interest- board gaming. As a kid I loved games like Sorry, Clue, and Risk (not Monopoly. Never Monopoly), but, like most adults, I stopped playing. But thanks to the internet, I learned that board games had moved on from the Classic games that I knew, to more Modern Board games. Games like these are become more popular, in fact, you may have heard of games like Settlers of Catan, Ticket to Ride, or Pandemic. These are the types of games that pulled me in.

I love that these games are like competitive puzzles, and that you can play them over and over without them feeling old. They also involve a social component, and while this is something that I struggle with, Game Nights aren’t socially stressful at all!

So I’d like to share with you a few of my favorites, partially because I like exposing everyone that I meet to board games, partially because I think you might enjoy them, and partially because if you get tired of listening to me talk, I won’t know.

1. Patchwork– This is a fairly new acquisition, but I’m smitten. Patchwork is a two player game, in which both players are racing to build a quilt out of Tetris shaped pieces. I will make it known right now that I am terrible at this game. More often or not, I actually end up with a negative end score, but as bad at it as I am, I keep coming back to it. There’s so much strategy, do you make money, or do you cover more squares? should you shoot for bonus points or try to complete your quilt?, that I feel the need to play it over and over again. Let’s just say, the day we got it, we played 3 times in a row, and leave it at that.

2. Codenames– This is a great party game, which is generally defined as a cheap easy game that plays a lot of people, and Codenames fits all of these. It’s easy to find cheaply at places like Target, it can be learned in under  5 minutes, and it allows up to 10 players. And as a bonus, it comes in themed versions like Marvel and Disney! This game is played in themes, like Pictionary or Charades, and involves guessing words from limited clues, also like Pictionary and Charades. I enjoy playing it in groups, because as the games go on, people go from being a little stressed, to being incredibly enthusiastic. This is a great game to play with anyone, gamer or not.

3. Betrayal at House on the Hill– Betrayal is a really interesting game because it has two parts. In the beginning it is a cooperative game, meaning all of the players are on the same side, and are working together. But in the second half of the game, one play betrays the other, and it because the betrayer against everyone else. I’ve been informed that when I’m the betrayer, I’m ruthless, down to having an evil laugh, but who are you going to believe, them or me? This game is highly replayable, because it doesn’t have a static board, the player build the board out of tiles as the game goes on. It also has dozens of scenarios for the betrayer, so it never gets old. For any fans of Baldur’s Gate, there is a themed Betrayal at Baldur’s Gate too!

4. 7 Wonders Duel– You may eventually start to notice that I talk a lot about two play games, and this is mostly because my gaming group only gets together once or so a month, so I spend most of my gaming time playing with my wife. It used to be hard to find good two player games, but things are changing! This game is a spin off of a very popular game called 7 Wonders, which involves you building up your civilizations by building wonders like The Pyramids and The Hanging Gardens of Babylon, advancing your scientific knowledge, and building your military. It’s a lot of fun, but I have to say that the two person version is actually better. It’s more streamlined, it is a lot easier to understand, and it’s not nearly as sprawling (7 Wonders can take up a whole table). This is another game that I lost a lot in the beginning, but I’m finally starting to understand the strategy. It’s a pretty solid game, even for people who don’t game much, is pretty rare!

5. Jaipur– This is another two player game (see, I told you!), that is definitely simpler than 7 Wonders Duel. The theme is that you’re a merchant on the Silk Road, trying to sell spices and jewels and silk to make money. It’s a set collecting game, like Uno, so say you’re collecting silk, you want to get as many as you can, because you’ll get more money and more bonuses selling 5 silk than 2. It’s a very straightforward game, it doesn’t take a lot of attention or thought, yet, the more you play, the more you realize there’s little bits of strategy here and there. Our scores having slow increased from the 40’s to the 80’s as we’ve gotten more plays in, which is really satisfying. Also, there are camels.

6. Niya– I got this in my Christmas stocking, and we’ve already played it 4 times! It’s another two player, very simple game, think of it like two steps up from Connect Four. The reason I’m including this is because it’s portable enough to keep in your bag, it has a super small play area, so you can play it at restaurants while you wait for you food, it plays in under 10 minutes, and is so easy to teach that you could find a random stranger and play with them. Also, this game is gorgeous, based on traditional Japanese art, so it’s fun to look at, and fun to play!

So here we are! Did you get tired of listening to me? I certain hope you made it this far, and also that your interests may have been piqued in regards to board games! I’ve linked all the games that I talked about, and if you have any questions, I’m more than willing to talk about it. In fact, I’d welcome it!

Do you like playing board games? How about when you were a kid? Talk to me about your experiences and your favorites, I love talking about this stuff!

8 Favorite Quotes About Autism

If you interact at all with social media, you’ll know that quotes are everywhere. They’re usually posted on top of images on mountains or sunsets, and are more often than not credited to ‘anonymous’. Not to say there aren’t some good quotes out there, especially ones that describe experiences, instead of forcing vague positivity on the reader. It can be hard to sort through Autism quotes, because a large percentage of them are made about Autistic children by Neurotypical adults. These often border on inspiration porn- and they infuriate me.

So, in order to combat these, I’d like to share some quotes about Autism that I enjoy.

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So here they are! If I had to pick one, I think that the square peg one is my favorite, but there’s so many quotes out there, that I’ve probably missed some great ones! So, dear readers, if you’ve got a quote you love, let me know (especially if they’re funny, what can I say, I’ve got a weakness)!

Now I Know 30 Things

I turn 30 today, and for the past few months I’ve been feeling really anxious about it. I get caught in this spiral of feeling like because of mental health reasons, chronic illness, and autism, I’ve wasted my twenties. Lately though, I’m more in the mindset that I’m just a late bloomer. I’ve got a lot of life left in me, and I plan to do great things with it! But the most important part of this whole thing is, because I’m 30, I now know 30 things. And if you don’t mind, I’d like to share them with you.

  1. Trapping bugs under a cup instead of killing them is good. But if you’re not going to take them outside right away, for the love of God, tape the cup down. They can escape.
  2. Doing the right thing sometimes doesn’t feel like the right thing. That doesn’t mean that you should stop.
  3. Hydrogen Peroxide can get dried blood out of almost anything. Do with that what you may. Not murder.
  4. Whatever amount of garlic a recipe calls for, double it.
  5. Just because an emotion you’re feeling is negative, doesn’t mean that it’s bad.
  6. Always keep a snow shovel in the trunk of your car, in case there’s a freak storm and you need to dig yourself out.
  7. The key to never having to talk to telemarketers is googling any number that you don’t recognize, and if it’s not important, ignoring it.
  8. Don’t meow back at cats, it just encourages them.
  9. If you like something about someone, be it their hair or their shoes or their sense of humor, tell them. It’s good for both of your souls.
  10. Self care is whatever makes you feel calm and safe, so don’t let anyone tell you how to care for yourself.
  11. The key to not being embarrassed is realizing that 97% of the time, people are too busy thinking about themselves to notice you.
  12. Most DIY projects are expensive. If your goal is to have fun and get messy, awesome, go for it! But if you’re trying to save money, do the math first.
  13. You can write on mirrors with dry erase markers, which is way more convenient than writing notes on your hand. Also, there’s less risk of accidentally washing away important information.
  14. If you have weird medical symptoms, Google with care. The internet is almost definitely lying to you. You do not have cancer.
  15. Superglue is a necessary evil, and it is inevitable that at some point, you will glue your fingers together. Luckily acetone, which is found in most nail polish removers, will un-stick them quickly.
  16. Finding used books that are written in is like finding treasure. Seeing other peoples’ notes, the parts they loved, the parts that confused them, the parts they disagreed with- it’s like reading through someone else’s eyes.
  17. If someone criticizes you in a non-constructive way, meaning they aren’t giving you realistic advice on how to improve, that’s not criticism, it’s an attack. Feel free to fart in their general direction. Or just ignore them, I guess, that works too.
  18. If someone is tailgating you, as long as you’re going the speed limit, there’s no point in speeding up. It won’t help, and you’ll be the one pulled over for speeding, not them.
  19. Don’t talk down to kids, they’re smart little cookies, and they understand more than you think. Also they’ll rule over us all in about 40 years.
  20. If you’re looking for a masculine haircut, go to a barber instead of a hairdresser. They’ll get the lines right, plus it’s way cheaper.
  21. The snooze button is not your friend. It’s too easy to forget how many times you’ve hit it, plus, you’re not getting any quality sleep between alarms.
  22. Chopping chile peppers is a threat to your mucus membranes. Wash your hands immediately and always remember that, in an emergency, milk works better than water.
  23. You can get heatstroke without a sunburn, especially if you are 8 and at Disney World. Signs and symptoms include dizziness, headache, and vomiting, and if you suddenly stop sweating, it’s time to find some help.
  24. Because humanity is largely social, people generally want to help each other. This means you’ll have much better luck getting someone to do something if you phrase it as needing help, instead of as a demand.
  25. Most Dollar Stores sell the same candy you’d get at the movie theatre for a dollar. You’re welcome.
  26. There are other pronouns besides He and She. Gender non-conforming people also use pronouns like They, Ey, Zir. You’d think with all these options I’d have less trouble picking one…
  27. When you start a new medication, always check if it interacts with anything else you’re taking or eating or drinking, because doctors are notoriously bad about catching uncommon interactions.
  28. We all over-salt recipes sometimes, whether our hands slipped, or we got distracted by the dog outside our window and forgot that we’d already added it. Luckily, anything liquidy can be saved by sticking a raw potato in there for about 10 minutes.
  29. Turning your computer off and on again isn’t always the right answer. Sometimes getting another person close enough so your computer knows you’ll look incompetent if starts working again is just as good.
  30. You’re not wasting your life. You’re not wasting your life. You’re not wasting your life.

7 Favorite Childhood Books

I have been an intense reader my whole life, starting when I surprised the pants off my parents by reading my favorite book to myself when I was three. Now, they weren’t as surprised as they could have been, because I’d started memorizing books a few months before that, and it took them a while to realizing that I was actually reading. And since toddlerhood, my love for books has only gotten stronger. When I was in elementary school, the library put a book limit on my card because I was determined to read the entire children’s section, and would take out dozens of books at a time. The past few years I haven’t had the brain power to do much reading, but this year, to my immense pleasure, I’m back on track! I’ve had a great book year, I even hit my book goal on Goodreads last week. So in sort a celebration of that, here are some of my favorite books from childhood, I can highly recommend all of them!

1. Matilda: I feel like Roald Dahl’s books are universally loved among children. Even if they haven’t read any of his books, name me a kid who hasn’t seen Willy Wonka and the Chocolate Factory? Matilda was my favorite because I hardcore identified with her. I wasn’t the sort of genius that Matilda was, but I had a 3rd grade superiority complex, and was constantly frustrated by everyone who was “stupider” than me. Thank goodness I’ve outgrown that. I also saw myself in Matilda when it came to families. In most books aimed at kids, parents are either Perfect, or Abusive and Evil. Most authors grossly underestimate a child’s ability to move beyond black and white thinking. But Matilda’s parents were 100% grey, it’s not that they were intentionally terribly; it was more that they were completely self-involved, and they simply didn’t care. I secretly wished for a happy ending like Matilda’s- to find an adult who care, one who would take care of me. Unfortunately, fiction is fiction, and life is life. It’s still a great book, I promise.

2. The Way Things Work: My Aunt and Uncle on my dad’s side always bought us educational gifts. It bugged my sister sometimes, but I never had a problem with it. I’ll read anything, cereal boxes, the backs of shampoo bottles, so for me, any book is great! When I was in 3rd grade I received a giant tome called How Things Work. It took a very engineering approach, and had what seemed like infinite pages of anything and everything you could possibly image, taken apart. I tried reading the whole thing through multiple times, but every time, I’d skip a page because I saw something cool, and I’d never get back on track. If I had been better at math, this book could have slid me into an engineering job, for sure.

3. Jacob’s Rescue: In my quest to read through the children’s section, I read some pretty boring books, but I also picked up some that would change me. I’ve written before about how my Holocaust Special Interest really affected my personality, and this book right here, is what started it all. I didn’t know how important it would be at the time, it was just the next book on my list. Let me tell you, I must have read this thing a dozen times the first time I took it out. And I kept taking it out. I’d never read anything like it before, and it started my need to know everything that happened during that time. 3rd grade me figured knowing everything was the closest I could get to helping, 55 years later.

4. The Monster at the End of this Book: This is mostly important because was one of the first books that I read regularly to myself. My sense of humor has always been a few degrees off everyone around me, but it wasn’t with this book. I don’t care how young or old you are, this book is funny. Grover is neurotic and silly at the same time, and he breaks the fourth wall, which when I was a tiny little thing, was hilarious!

5. The Phantom Tollbooth: Have you ever read a book after seeing the movie? Especially a movie that you love? For me, it really goes well. Movies give me a very visual interpretation of a story, and reading the book is a very different experience. This is one of the few exception to that. I got this movie out of the library week after week. Watching it is a really bizarre experience, it was made in the seventies, and is part live action, part animation, filled with slightly trippy musical numbers and Dali-esque scenery. The book has equally weird illustrations. I think I was ok with both interprestions because the idea of a land with words and numbers were considered important, and where the goal was Rhyme and Reason was so appealing to me that I was willing to accept any interpretation of it. This story is so important to me, that the Princesses of Rhyme and Reason are going to be my next tattoo!

6. A Little Princess: This is a classic, one that didn’t bore me at the time. If you’ve heard this story, you probably know why it was one of my favorites, just like Matilda. Adults who have no right to be taking care of children are eventually ousted by loving adults. On top of this, it’s a great riches to rags to riches story, with a strong female protagonist, and lots of adventure along the way! The book was made into a movie back in the 30s, and I loved it. And I was so excited when I found out that the movie was being remade! Unfortunately for little autistic me, there were several very loud and overwhelming battle scenes, and I eventually ended up running out of the theatre. I still haven’t seen the end of it.

7. Good Families Don’t: Let’s face it, farts are funny, and the author who wrote this book very skillfully makes sure everyone knows it. I loved it, and wanted to hear the story over and over, but for whatever reason, this wasn’t a book I ever really read to myself. I loved reading to myself, because I could go fast, and skip the boring parts and read my favorite parts over and over, but there’s something really nice about being read to. I don’t know if other early readers have had this experience, sometimes every though I could read to myself, I still liked being read to. So this book is special, mostly because it was something that I read with my parents. We’d spend time together doing something I liked and we’d laugh together. This book is good memories all around.