Funny way of saying things

Mom: Lydia, can you bring in the groceries?
Me: I'm very nervous!
Mom: What?
Me: I'm very nervous!
Mom: I heard you. Why are you nervous?
Me: Because there's ice behind the car and the groceries are in the trunk.


(This one I actually caught before I said and rephrased, though, so this is a "what almost happened" example).
Me: Dana (therapist running group), my ears are hurting.
Dana: (she would look at me with a confused, scrinched up face). Excuse me?
Me: Could you please be a little quieter?


Me:... (finishes a story). Now what do you want to tell me about?
Friend: What?
Me: What do you want to tell me about now? What do you want to talk about?
Friend: The usual way to ask that is, "How are you?"


Me: Is Elsie pretty or is she funny looking?
Leigh: What are you anxious about?
Me: Going on the retreat next weekend...

(Just now, on the phone with Leigh...)
Me: Ughhh... my words are constipated again!


Anyway, those are a few tidbits from the past few days. I don't know how I do it, I just seem to have a strange way of getting my point across. My therapist noted that a lot of times what I say is simply very "me" centered, when someone would expect a "you" statement (ergo, my ears are hurting versus can you please speak more quietly?). Given that I'm kind of 23 going on 12, this makes a lot of sense developmentally.

Personally, I think my way of speaking makes a lot more sense than the socially conventional way. Even if it's not the words most people would use, I find it strange that they sometimes don't understand what I'm saying when I think I'm being very clear.

For the time being, I guess it's okay, because people usually tell me that it's "cute" or some version of such. But you know, cute is okay when you're 23 and look 16. What about when you're 43, or 63? Can you still pull off childlike and cute? I worry.

I have a cat

The sentence "I have a cat" (or another frequently repeated cat phrase; there are three of four of them) serves three purposes for me:

1. It's a filler, much like your "um" or "uh."

2. It's comforting when I'm anxious.

3. It's almost like a verbal tic.

I can't remember now what brought it to my attention, but I realized in the last week or so how much I talk about cats. I mean... by any standard, it's a lot. "I have a cat" pops in mid conversation (as does, "My cat is pretty, right?" or frequently in my head or to the cat herself, "Don't worry, Elsie. You're a better cat than any of them," which is from a Disney thing.) Sometimes it's just chatter about cats, my cat, your cat... any cat.

Mom and Leigh both report, er, frustration and fatigue regarding the cats, and I'm guessing that other people feel the same way and haven't told me. When the therapist asked the group "if she really does it that much," they all responded with an emphatic yes. They are right.

My therapist suggested that I use a technique that is used for people who are extremely shy. She said I can write a list of other things I like and refer to it frequently in order to find other topics to discuss. I'm working on this. It's hard.

I want to talk about cats. It's fun and enjoyable and it makes me happy. Yes, it's compulsive... but I like it.

I must admit some annoyance at those who do not want me to talk about the cats. I don't particularly care about some things others talk about, but I do my best to listen, you know?

But, the world can't cater to autism, so autism must cater to the world. And so I shall try.

Almost a month at home...

I've been home for almost a month. Things were really shaky there not too long ago but, at least today, I'm doing... okay. Dare I say well? Maybe I wouldn't go that far.

I get up every morning at 7 and get ready, then leave at 8 for the hour-long, 20-mile drive to partial. I'm there from 9-3, and then I make the same (but shorter in time, longer in miles) drive home.

At home, I clean, stop at the grocery store if I need anything (which is at least twice a week), exercise, make and eat dinner and sometimes a snack, play with the cat, sew, computer time, put things away, mess with my dolls, and I'm forever vacuuming because Elsie P makes a mess with her cat litter on my dark brown carpet.

Of course, today the roads were so bad that I didn't get to partial. My car was plowed in, and I sure don't have a shovel lying around my one-bedroom apartment. I tried to dig it out with my feet, and did get out of my spot, but the roads weren't plowed yet. I grumpily came back in and went right back to sleep. Woke up two hours later, and with the hour long commute, didn't think it was worth it to go in at that point just for the afternoon session.

One of the things we learn in DBT, one of the skills, is called effectiveness. Effectiveness, in this case, refers to "doing what works for you." I'm finding ways to use effectives all throughout my day... when I wear earplugs or headphones at church, the movies, while I vacuum; when I hang onto a squishy (Do tell me you know what a squishy is. I don't know how to explain them. Little squishy creatures that squish?) so that my hands don't pick; when I "go to the bathroom" in public places to get a little bit of my own space (as long as there aren't any jet-like handryers in there, it works pretty well).

So, I need to use some effectiveness to plan for the women's retreat I'll be attending in March. It's at a hotel about a half hour from home, and there will be worship music with a band, a speaker, and small group discussions. My hotel room will be with a good friend, just the two of us, so that will be very good to have "my" space as opposed to a 4-person room with strangers. I'll bring earplugs for the worship band and find a nook to disappear to somewhere nearby if the music is too loud. I'll bring my laptop for after things are over for the night to zone out with (my friend can go to the pool or do whatever she wants and I can chill silently in the room and give myself a break). I'll bring Tigger or somebody, just in case. I'll mean to bring the klonopin but will likely forget it, because I always do.

But just between you and me? I'm nervous as all get out about this retreat. It's been a long time since I've done something like this without my mom or Leigh present. Maybe even a long time as in forever.

Usually, when I stretch myself for something, it turns out well and I kick myself for worrying so much. Usually...

Rant

Maybe you haven't noticed, but I am quite the spelling and grammar policewoman. I read and reread everything I write to ensure that my speedy fingers haven't let anything slip. I try to fix all typos. I carefully consider my commas. I rarely, if ever, use any shorthand.

I participate in several message board communities: One is for parents of kids with autism (because the only board for adults with autism... well, I've talked about that before, but I can't stand it, to sum things up) and the other is for adult collectors of American Girl dolls. On the AG board, there is a rule that members must use good spelling and grammar to the best of their abilities. No shorthand nonsense or anything like that.

But the other board... sigh. One member to my knowledge has never used any puncuation of any kind can you imagine I do not read these posts I simply can't make sense of them. Other people Randomly capitalize What they think is Important and leave out any question Marks do you know what I Mean. CANT FORGET THE SHOUTING POSTS EITHER. Others include so much shorthand (u got 2 no wat i mean wit dis 1) that it looks like a 12-year-old wrote it via text message.

I have nothing against people who struggle with spelling or have limited English. It's sheer laziness that drives me nuts. If you would like us to take the time and consideration to answer your question, then please, give the rest of us the consideration of your best composition, or at least a readable one.

Anyway, I would greatly love to complain about this on the board, but... I won't. So I'm complaining about it in my domain where I can kind of say whatever I want. If I don't complain somewhere, I'm going to burst.

I'm thinking that this makes me a bit of a snob; as in, I'm better than you because I attempt to type like an educated human being (which I'm fairly certain that you are one, as well, and thus have generally the same capabilities to use a keyboard and synthesize a post as I do). To be clear, I'm not asking for college-level composition, here, but rather... about 3rd grade would do. Honest mistakes? Typos? A rogue apostrophe? One or to their/there/they're or your/you're (do people even know that "you're" exists?) errors? I don't mind a bit. Just put a little effort into it, and we can be great friends.

Now, if you can use "your" and "you're" or "its" and "it's" correctly in one or two sentences (up to you), you may ask me ANYTHING you want (I mean, adhering to generally accepted social guidelines), and I'll answer. Or if you can think of a better prize (because I can't right now), then sure, that too. Just please, redeem my hope in the future of grammar?

I refuse

So, I listen almost exclusively to KLOVE on the radio. It's a contemporary Christian radio station with no outside commercials. While I don't easily get offended by another person, I do have strong feelings about some of the messages portrayed in modern music and basically, prefer not to listen to it. I go as far as asking if it's okay if we turn the radio off and talk, or put on another station, when I'm in the company of others. I can truly feel the difference the music makes in my mind, my attitude, and my actions. Okay. Soapbox done.

Now, there's a new song my Josh Wilson out called I Refuse. It's about refusing to sit around while others do what God has asked you to do yourself. The song's alright, but it did get me thinking... what am I doing right now to help others? Yeah, I help out with the kids at church once a month, but is that really all I can manage to do? I know, I'm in partial. I know, I can't work for the time being. I know, I panic at loud noises and crowds... but still, mustn't there be something I can do?

And, as always, my former place of employment comes back to mind. Those cats need me. I can do things with those cats that no one else can. I can pet the unpettable, talk down the panicked, and love the unloveable. I haven't seen my cats since my last day of work on October 7th. Given that at one point I was having panic attacks at the sheer thought of the place, I wondered if I would ever go back.

So, enter tonight, when I came home from partial and wasn't ready to settle in for the night yet. I mean, 22 hours in a small space is a lot to ask of anyone, let alone antsy, antsy me. I ran through the usuals and came up with nothing. I called Mom... still nothing. Then I thought, hm, I could... maybe I could go back. Just for an hour, just ONE cat if I want to. No pressure at all.

Before I thought too long, I hopped in the car (which provides a stressful 45-minute ride to the shelter during which to build anxiety). My chest was throbbing by the time I got there. I went in and signed it and went into the "heaven room," or Cat Free Roam 1. Why heaven? Because there are 10 friendly cats, and you go in, and you're just surrounded by them. Tonight, someone was hissy/swatty at some other cats (I said, "Boy, Sylvia, you're not a cat person, are you?" so it wasn't so peaceful, but usually it's sheer bliss.

It was at that point I saw my former coworker, D (of the famous D and J pair, previously described somewhere in my bevy of posts). D was happy to see me but maintained professional appearances... asked how I was, but not why I'd left or where I'd been. We kept our conversation strictly to kitties and new and old favorites.

Then, just as I was leaving, I saw my buddy J. Oh, I've missed J. She is truly something else. She's in her 60s, has one tooth, and wears her hair in a bun on top of her head. She's an incredible worker and has been with the company something like 20 years. She practically ran up to me and hugged me, had tears in her eyes, and was clearly worried. She asked where I'd been, what had happened. You see, while I cut things off appropriately with my boss, to my coworkers, I just... vanished. Gone. I'm sure they wondered why. I told J that I'd been hospitalized several times, and she said, "The psych stuff? That panicking?" And I told her yes, that that, among other things, had been giving me a lot of trouble. She didn't push.

I asked J how she was, what was new around the shelter. She said that they're down to 2 to a shift (should be 3, really need 4 to function well). That would be almost like torture. No one will take the job for so little pay, because it's so much work. I told J that while no time soon would I be coming back to work, per se, I would love to come back on Sundays and help them out for a couple of hours. This would have me doing laundry, filling Kongs, and doing dishes. No direct animal care. But I love animals, right? Well, yes, but I can handle 250 animals in succession, go go go. I panic. When I do cats, I only get out one, then another, then maybe one more, and then I go home. I can't do the cat after cat after cat that feeding and cleaning entails.

So, moral of the story is this: I conquered one of my biggest fears with no extra medication. It was all me. Two of my favorite cats are still there, poor babies, and they definitely knew who I was. It was good to see old kitty and human friends.

Is this what getting better feels like?

Levels of me

There are about, oh, 900 things I could write about right now. But I'm putting it all on hold right now for the sake of the topic that keeps coming back. It's the one that's missing from my book: faking it.

I was talking to my therapist today, and amidst discussions of repairing fractured friendships, being confident in alone time, and writing for me, I brought up the subject without really knowing where I was going (usually, I don't start to talk without a firm idea of where I'm going... that's not to say I don't very frequently lose that train along the way, but... at least I start out solidly).

First, the disclaimer: This is not unique to autism. Not by any means. However, I think that there is a specific kind of "faking it" that many (at least female) autistics learn to do to function.

Not real or "faking it": Engaged, verbally fluent, calm, understanding, self aware, mature, making "eye" contact.

Real: Spacey, losing my train of thought and stumbling over my words, anxious, self absorbed, childlike, emotionally unstable.

Before you think that it's best to always be real, consider the fact that the "real" me inevitably drives everyone away. At least, to date, it has. Secondly, consider that I would never make any progress in therapy if I continued in this state all the time, because I wouldn't be able to take in the skills or apply them. In order to have friends and in order to find a livable life and heck, in order to be able to blog, I absolutely must learn to use my "faking it" skills sometimes. Maybe "faking it" isn't the best way to put it.. maybe it's simply a different level of myself to which I must become more attuned in order to progress.

But it doesn't feel comfortable nor natural. I think, even when in therapy and thus functioning in a fully "fake" state, it's important to let bits of reality come through. My therapist told me today not to try to fake it when I get stuck on my words; simply say, "I'm stuck" and stop. I'm pretty good, though not perfect, at continuing to talk to through the stuckness until I can pick up again. She asked me not to do that... I hope she realizes how often I get stuck!

Sometimes, I envy the little ones who haven't yet learned to fake it. They just get to be 100% them, all the time. It's absolutely exhausting work trying to be older than you are, more together than you are, calmer than you are. That's the part that I think most everyone can understand, though, right?

Radical Acceptance

AS. GAD. EDNOS. Panic disorder. Impulse constrol disorder-NOS. What am I missing? You get the idea.

But there's a new kid on the block. He's the one nobody likes. He's mean, he's manipulative, he's cruel, he kicks puppies.

To be honest, I've known in my heart for years that I had this diagnosis. As soon as I read about it, I was like... wow, that's me. Kind of like what happened with Asperger's. Now, there are a lot of symptoms of the disorder that I do not have, but there are also a lot that I do have. And I'm scared. 10% suicide rate? Little hope of recovery? Clinicians refuse to treat it? Oh, great.

Three conversations really helped me think this through, though. One was my mom. She said that while I may have this diagnosis, I'm far from beyond hope. I have a lot going for me, and especially because I'm aware that I have these traits (whereas most people with this disorder are not and refuse to believe it), I can work to counter them. The second conversation was with a girl from group, who said that she too has this diagnosis, and that if she could pick any diagnosis to have, it'd be this one. Why? Because it's behavioral and not chemical. You have little hope of changing the chemicals in your brain, but your behaviors are yours for the changing. Then, my dad said he's glad I got the diagnosis because it means I can learn about it and begin to do something about it, as opposed to letting it control me.

I'm honestly afraid to write this post and have you all suddenly walk out the door in sudden fear of me. I'm the same person I was before I had this label; in fact, I've had the disorder the whole time. And really, only the people who know me best are apt to notice the traits of it. Good and bad, that is...

If you ask me, this disorder is a killer combo with autism. It leads to social problems of its own, and then the autism means that I don't pick up on the social cues that people are turned off by me. It causes big, big messes, and I'm in one right now. It's so, so hard to apologize for things you didn't feel you did wrong, but then, I'm sure I did and just didn't know it, and I desperately want my friend back.

Compartments

This is one of those "there's so much going on I don't know how to start, where to go, or when to stop" posts. And did I mention that I have a self-imposed 13 minutes time limit to write? Because then I need to do some things. You know, important things. Like get a shower (because I never did that today) and change my pump site and go to Mom's to go out to dinner. Things that need to be done.

I narrowly escaped a return to the hospital today. I'm not doing well. Though I'm sure most of you can read the details into this, I flat out refuse to expose the person by being specific. Things are currently very rocky with a very good friend. Maybe irreparably so. There was anger over things that I strongly believe that, while I can and will continue to try to improve them, they are part of my autism and not entirely within my control.

Add this to the fact that I caught my reflection in a mirror the other day without realizing it was me, and I truly saw one of the biggest people I've ever seen in real life, and... well... things got bad. I'm emotionally dysregulated, to use a DBT term, and I'm handling it poorly. I'm not sure that I could have stopped the spiral sooner, but the fact now is that I didn't, and here I am. The doctor at partial wanted me to return to the hospital, but we set up some outside supports (time with Mom, more time with Mom, calls from the crisis resolution network each day) and I think I can manage at home.

My therapist at partial did some really cool things in the midst of this, though. I admit my total misread of her "outside the box"- ness. She wants to read my book (being that I can't even afford my own copy right now, I sent her the manuscript) totally of her own accord and wants to do some emailing to let me process some things. Regarding the book, she wants to get an idea of where the AS diagnosis comes from from a behavioral standpoint, because she just doesn't quite see it, I guess. I think that may be for several reasons, including my rather superior ability to fake it when needed, my ability to hide what I'm really like, a result of my intelligence leading to improved superficial social skills (I kind of empirically collect data to determine some semblance of what is "normal," then simply copy, when I can). All this to say, at first glance, I have the ability to come across as an intelligence, neurotypical, albeit in some aspects immature, young woman.

And (this is the part I like) she says that diagnoses are for insurance and little more. She treats people with symptoms, not diagnoses. So the fact that I have many autistic traits is not so important as what those traits are. And, frankly, the autism isn't really my main issue right now... though, I would argue, it colors everything else. By the same token, my innate mental instability, colors the autistic symptoms, too. It's all wrapped up in each other.

Okay, not really done, but time is up. By the way, Elsie is sure trying to help my type today, so if you got any kitty-speak in the middle of my post that I missed, I apologize.

Bad number day

I mean, maybe it's the autism in me, but boy do I love numbers. Love-hate is more accurate, I guess. I get so wrapped up in the amounts, measurements, quantities, that I lose sight of what's really going on.

The most obvious one right now is my weight. If it's up, I don't eat at least one meal that day. I know that weighing myself daily is just asking for trouble, but the prospect of eating when my weight has gone up and not knowing is just too much to bear. Don't for a second think that this applies to doctors and the like... no, I won't let them weigh me no matter what. The fact that the number on their scale may be different than the number on mine (which is the same as the hospital scale and is accurate)... no way. Can't handle that. One number per day, no more, no less.

I also get wrapped up in blood sugars, calories, minutes working out... you get the idea.

But a new number caught my eye today. "Doing well" is when I post every other day on here... 15/month. Doing "ok" is when I post every third day... 10. January? I posted 3 times. That qualifies as horrible. Now, remember that I said that I wouldn't be posting as much. Remember that I was in the hospital. I was taking a break, right? But that number is just too much. I don't like it one little bit.

And my weight is up today. And it's Tuesday, which is an orange day and sometimes even a 3 (days have colors and sometimes numbers). And it snowed so I have to go clean off my car, and me being me, I refuse to wear a coat, so it will be cold. Grump grump grump.

I think I need the kitty.

(Un)professionals

I'm aghast at the unprofessionalism and unawareness I'm facing when dealing with my health professionals.

I've been seeing my PCP since I was 15. He knows that the only time my weight is within the by-the-books "healthy" range is when I'm half starved to death. He's seen it. So when I went to see him on Tuesday as a followup from my hospitalization, I expected him to understand why losing weight is not my top priority right now. He must have told me six times and six different reasons why I need to lose now. My broken foot will hurt less. My reflux will improve. I forget what else. First of all, all of that is utter crap. My reflux is the same that every person who has been through an ED faces when refeeding... it's my body relearning to digest food. My broken foot, without its boot on, doesn't even hurt! He's just trying to get me to want to lose weight now, which I obviously already want and don't need his help with, but my better judgment tells me to put it off while my body and mind recover. With the exception of the effects of starvation, I have literally no ill health effects due to my weight. Blood pressure, pulse, temp, cholesterol, it's all pristine.

That said, I'm switching doctors to one that my therapist/RD recommends, one that has experience with EDs, diabetes, psychiatry, all of that. We'll see how she goes. I hate to end blog posts this way, but I've had a long day and the words are simply done. No more. Maybe I'll be less anxious after my boys win the Superbowl :)

10 things NOT to say

10 things NOT to say to a person recovering from an eating disorder (and they've all been said to me since I've been home by people who should know better because I've talked to them about this):

1. It's impossible to eat that much and still lose weight (I hear: You're a pig).

2. You wouldn't look so big if you wore normal clothes (I hear: You're massive).

3. From the doctor in the ER: Frankly, I see nothing wrong with you (I hear: Go home, keep doing what you're doing).

4. Well, you look better. (I hear: You don't look sick anymore. You look healthy. You look fat).

5. Wow, that target weight sounds really high (I hear: FAT... = you'll never be pretty).

6. Are you really going to eat all of that? (I hear: You're such a pig!)

7. I'm so fat/I look horrible/I need to lose weight- referring to yourself (I think: If YOU need to lose weight, I must be disgusting).

8. Well, I'm on a diet and I'm eating x calories per day (I hear: ...and you're a pig because you eat twice that much!).

9. Aren't people with EDs thin? (I hear: You're faking it.)

10. Can't you lose weight healthily? (First of all, no, I can't; that's why it's a disorder. Secondly, all I hear is "LOSE WEIGHT NOW.")

And a freebie: 11. I would never eat... insert food/drink here. I've been told that V8 fusion, all carbs, nuts, organic chicken, organic eggs, and I forget what else are all horrible for me. And that's just this week. My food choices are not up to my mom, my friends, my sister, or even my therapist: they're between my doctor, my nutritionist and I.

Busted

Once upon a time, last Wednesday night at 6:08 AM, I was sleeping. I unfortunately dreamt that I was in the shower (if you know me, you know I HATE showers for sensory reasons. so this is starting off badly) and, worse than that, I knew that there was a large man on the opposite side of the shower curtain, about to attack me.

So what did I do?

Well, of course, I kicked as hard as I could. You know where. Only, I was actually in my bed, not the shower, so instead of hitting the shower curtain and subsequently the man, I hit my wall/window beside my bed. It. Hurt.

I walked on the foot that day, went to the gym on it... I mean, it hurt, but I never thought it was anything more than a bruise. I took my shoe off and... KABLAM! That thing swelled up and turned purple before my eyes!

When the pain, bruising, and swelling hadn't subsided by Friday, I called an orthopaedic doctor for an appointment and he got me in on Monday.

Basically, the xrays are clear, but he's certain that my first metatarsal is fractured. He put me in a hard-soled surgical shoe for 4 weeks and will re-x-ray in a week to look for signs of a healing fracture.

And the worst part: No gym for a month :(

Which is probably a good thing, because I've been losing weight rapidly (think a pound a day or more) this week on 2350 calories. Now, weight loss is okay, but that's too fast. So my calories are up to 2700. I feel like a PIG. Who loses weight on that much food? Apparently the girl with the magic metabolism. I know most of you are probably jealous that I "need" to eat so much, but honestly, this is also the girl who hates to eat, so it's kind of a nightmare.

I just keep telling myself that it will pass.