9.27.2014

Life is not fair. Duh.

I'm really fed up with everyone talking about how everything sucks and life is just one endless bag of misery and nothing ever gets better, turning to me with their big sad weepy eyes, looking for pity. Not for advice, or for anything to cheer them up, or for a different perspective. Just. Pity.

Sorry. Fresh out.

Yes. LIFE SUCKS.
It's a big long tunnel, walls made of shit and shame. The only way to the end is to shuffle through the sewage of the everyday. Some people get rafts. Some people get goddamn party boats and we hate those people and we want to curse at them because HOW DARE THEY get a goddamn party boat.

"How dare they get the Barbie Malibu Party Cruise Ship when I am sludging along the shore, clinging to the dung wall of humanity, wearing fucking neon green Duck Dynasty castoff gaitors?"

HOW DARE THEY???

Then you spot the one asshole floating on his back lazy river style, completely oblivious to the smell as well as the fact that both Ken and Barbie have margaritas in their hands. He also fails to notice the pitiful excuse for a raft slowly floating past him- the sad soul perched upon it looking as poorly put together as the mess of boards beneath his feet.

To add to your building resentment of anyone not currently wearing gaitors, his eyes do not even twitch in the general direction of you and your 80's waterproof jam pants.

Forget Barbie and her top heavy dream crew.

FUCK. THIS GUY.

9.19.2014

#WhyIStayed #WhyILeft #WhatToSay

I have been seeing lately, pretty much all over the place, various calls to action, personal accounts, cries of outrage in response to the latest ridiculous public event revolving around domestic abuse and a public figure. I had posted something from Upworthy, trying to make a point about what a lot of people don't realize about trying to leave abusive relationships: when people try to leave them, it can be extremely dangerous, and that's when the majority of domestic violence related murders occur.

After continuing to see much ignorance regarding domestic violence and harmful relationships, I posted something regarding my personal experience being in an abusive relationship- detailing as I understood it how it happened, how my reality became skewed, why I stayed in it so long, how I became alienated, how it became worse toward the end and even after we broke up.

A friend then asked:

What do you suggest for someone who believes their friend is in an abusive relationship?

I wanted to take my time thinking about this. There are so many things that we want to say should be done. In an ideal situation- as someone who loves the person who is being harmed, we might want to run in, white-knight fashion, tear them from the situation, even possibly kicking and screaming.

As someone who has been on both sides of the door, I can't say this is always going to be the best strategy.

I also want to say that I'm not any kind of authority and I would encourage anyone who is reading this here to please add to these ideas as they feel they can contribute in the comments.

1. Ask questions.
Ask how your friend/sibling/relative is feeling in general. Ask how work or school is. Ask how their partner's work or school is. Leave room for the idea that we DON'T always know what is going on in a relationship, but ask questions if you are concerned. Do so in a non-judgmental way.

2. Express concern for your loved one, not judgement of the partner.
If you are concerned about your friend or loved ones safety, welfare, health, happiness- focus on that. Try to steer away from focusing on criticism of the partner specifically. This sounds really difficult and it may sound like an odd thing to do.  The reasoning, in my mind, would be because at one point- and likely STILL- your loved one still cares for and loves the person who is being abusive. We can't explain why we love people. And we can feel ashamed and be very hard on ourselves for having feelings that we can't control and can't explain. It can be confusing to love people who hurt us- and we can even feel like we deserve to be hurt if we still have confusing feelings of attachment for someone like that [or even think we have those feelings].
Keeping the focus on concern for your friend can help to keep those feelings of shame and embarrassment and that they may deserve this treatment away from the conversation to some degree.

Possibly not as effective: "[He] hurts you." "[He] treats you badly." "[He] is keeping you from family and friends." "[He] is making you feel things that are untrue about yourself."

Maybe more effective: "You are being hurt." "You are being treated badly." "You are being kept from family and friends" "You are being made to feel things that are untrue about yourself."

3.Follow up with examples of what would be a positive relationship
It can be difficult to understand at a certain point what is actually a good and healthy relationship. For me, eventually I had to go through a logical process over and over and over about what is a healthy relationship- what is going on in my relationship, comparing the two, coming to the realization that no, people don't get slapped in healthy relationships. THIS SHOULD BE OBVIOUS... at some point it ceases to be obvious, because reality becomes that warped.  

[At some point in these conversations it may become very frustrating. Resist the urge to express frustration with yelling, short expressions of frustration or sarcasm, snide remarks. hug your loved one instead at these moments.]

Examples might be:
"You are being hurt. I saw you the other day and you said you fell down the stairs. Before this relationship you did not fall down the stairs so much. In healthy relationships, people do not fall down the stairs every couple of weeks. In healthy relationships, people love each other and hug each other. They don't physically hurt each other."

It can really depend on what your loved one tells you and endorses as to what is going on in their relationship- if they will only admit to falling down the stairs, I would say you can't push much further than that because they may feel betrayed, 

These are difficult conversations to have. They may become pissed off at first.
There may come a point where you DO feel you should tear them out of the situation.
I want to share the following first:

After I actually, officially, finally cut off my relationship, I went to a friends lakehouse for a few days. This was not any kind of strategy because I thought he would actually come after me- even after eveything had escalated toward the end of the relationship, even after trying to break up and doing this "kind of broken up thing" and things had gotten worse, it hadn't occurred to me that things might just continue to escalate.

But I happened to be out of town. And then the calls started. I was a few hours away, and very relieved and basically in another world, with my friends whom I hadn't seen in a long time. So I sort of laughed it off for some reason. They had started sort of benign. By the end of the weekend they were weird and desperate. I was still kind of laughing... kind of. But mostly because I didn't want to make a big deal about it, and no one knew what the relationship had been like.

By the time I got home they had escalated to threatening. That evening they were sexually, violently threatening and I was by myself in my apartment- and he knew where that was. So I called the police. They came over, and took a report. They suggested I get a restraining order. They also went to his house. Once they left my apartment I took off for the night and left town for a couple days. I moved out shortly after, but the timeline is a bit of a blur after that.

I really think that spending the time with my friends that weekend was a great contrast to the total absurdity of his threatening and harmful behavior. I did get a restraining order successfully and was occasionally worried about it. At this point I feel safe.

I shared that because it is very important that people leaving abusive relationships have a safe exit plan.

I want to share some recommendations for people who are thinking of leaving abusive and violent relationships:

Establishing preset signals with neighbors, friends, or family is an important feature of a safety plan. Signals might include an understanding with a neighbor that if they see flashing porch lights, hear loud noises, or a certain code word or phrase, they will know to contact the police for you. It may seem impossible to set up a support system that will respond to your appeal for help. You may be embarrassed to admit to the abuse and to ask for help. But we encourage you to explore your options.
Arizona Coalition Against Domestic Violence

-Make a habit of backing the car into the driveway and keeping it fueled. Keep the driver’s door unlocked and others locked — for a quick escape.
-Try not to wear scarves or long jewelry that could be used to strangle you.
-Create several plausible reasons for leaving the house at different times of the day or night.
The National Domestic Violence Hotline

---

Some final notes:

...many abusive partners may seem absolutely perfect in the early stages of a relationship. Possessive and controlling behaviors don’t always appear overnight, but rather emerge and intensify as the relationship grows.
-The National Domestic Violence Hotline

Domestic violence can happen to anyone of any race, age, sexual orientation, religion or gender.
-The National Domestic Violence Hotline
1 in 4 women experience domestic violence in her lifetime.
1 in 4 gay men experience domestic violence.
17-45% of lesbian women report having been the victim of a least one act of physical violence perpetrated by a lesbian partner.
-Everyday Feminism
If the victim does leave the abusive relationship, never pass on information about his or her whereabouts to anyone.
US Department of Health and Human Services

[and what I have been trying to express...]
telling them what they’re experiencing and what they should do about it can further isolate the victim who may or may not be ready to confront their abuse. It is so important to let the victim determine the next steps, to make their own decisions and take back the power and control over their own lives. When we make decisions for others, when we try to help them do what they are not ready to do for themselves, we are taking their power and control away from them.

RESOURCES:



ASIAN TASK FORCE Against Domestic Violence [Massachusetts and New England]

VAWnet, The National Online Resource Center on Violence Against Women [United States]

Americans Overseas Domestic Violence Crisis Center [Americans overseas]

WOMEN'S AID [United Kingdom]



Please note: Comments may be left anonymously on this posting.

9.17.2014

Frustration Tolerance at Zero.

I'm sort of losing any type of coping and managing skills or tools or any type of self-soothing techniques- anything you want to call whatever we manage to come up with to deal with the stupidity of the rest of the universe.

I have health issues which are not getting better. I'm still hanging onto the idea that they will. But believing that, and having other people tell me that, doesn't really help. At this point, it really just does not do much beyond make me realize that offing myself would be pretty illogical. It does not actually help me to cope in the moment all that much now. It used to, but the power of "this too shall pass" is really waning.

And it's getting more difficult to explain to my specialists what else is being affected. I'm... breaking down because I'm breaking down. The fact that I'm in pain 24/7 and it's starting to break me [though I tend to have a pretty high tolerance for pain] is making it so I have very little ability to tolerate nearly anything that is stimulating beyond what I normally expect. I'd eventually been able to figure out how to cope with or tolerate unexpected things, environmental and stimulatory discomfort to some degree for a certain period of time, expend a bit more energy to converse with people, be able to process and understand my environment more.

At this point, everything is just screwed. I have more and more problems talking and I just can't brush it off as "I'm tired" anymore. I'll try to start saying something and it's like I check out for a bit and i'm not sure what is going on with the sentence. Or I just can't continue half way through. I feel like verbally I only have access to half my vocabulary half the time. 

Auditory processing is just sucking way more than it ever has.

My startle reflex is absurd. 

I feel like I just have zero tolerance for frustration and this is the biggest thing. I have worked so much on figuring out how to not just flip the hell out at everything when encountering frustration or discomfort or the unexpected. I feel like I'm regressing to being a child and it's so so so upsetting. I can't find anyway to comfort myself and I'm also upset that there are so few people I can find comfort in dealing with this particular issue because not a lot of people understand. 

"just calm down". It's really akin to saying "just stop being conscious".

It takes so much effort to "just calm down". I can feel myself physically straining to do so. I recently threw up because I was struggling not to just flip out visibly because my computer was "being slow". If you flip out over something like that, no one is tolerant. 

...for reference, when I was younger, I didn't have "tantrums". I really think I went full on Chernobyl because I was legitimately upset [not because I was trying to manipulate a situation] and would do so until I passed out. This is what I remember.

That struggle has not gone away. The amount of frustration and the actual difficulty and inner response and turmoil I encounter due to environment and external situations has not actually improved. However, until relatively recently how I've been able to deal with the inner response, the inner turmoil, had

If you are struggling to not flip out as an adult, no one is supportive of you being upset and trying to manage how you are dealing with that upset- they don't have to understand it to be supportive- and very few even try to be because basically "get over it". So I got sick and got a headache because it was so overwhelming, at the age of 32, to not go all fucking Chernobyl over my computer slowing down.

I have an appointment with my rheumatologist tomorrow and it's hard to explain to her everything that is going on. Worse than that... I keep feeling like it's somehow my fault that the NSAIDS either don't work, or end up not working for long or [more likely] the pain is just getting worse so the dosages can't keep up. I'm still on prednisone and take the minimum. We tried stuff like hydroxycholorquine and I ended up just short of the ER [twice, because I wanted to give it one more go- "just incase" the first time was a fluke] from GI side effects so bad I was suffering severe dehydration.

But at the same time... it's like something SHOULD be working by now. In theory I'm "high functioning" supposedly to the point where the department of mental health won't "touch me with a ten foot pole" and I desperately need serious assistance at this point in all areas of my life.

There is a complex care team division of my health organization and I have now been referred three times over the past several months but no one will call me back. The awesomeness of this is that if I had the energy to be constantly chasing around people about my health care I wouldn't need a complex care team. *headdesk*

I feel like I am circling the drain. I need to make sure I make it to the damn appointment tomorrow, but I just keep being afraid before every appointment that I'm just going to be told "I'm not sure why you are feeling this way, it doesn't make sense"... possibly meaning there is nothing she can do, or maybe I'm blowing things out of proportion... even though we are looking to RA and lupus, because treatments for these things aren't working/are giving me really intolerable side effects. I seem to be getting worse but can't figure out why.

It becomes more complicated when I say that like, the pain in my hands, shoulders, everywhere interferes with stuff. But then she asks me if I can type, life things, etc.

Well... what do you mean by "can"?
I do those things. But they hurt. I do not do them nearly as often as I would if things didn't hurt. I do them because I have no choice. I don't live with my parents, or my boyfriend or any family members.

I can walk to the bus stop, shop at the grocery store and carry bags, make dinner and type and write out how I'm feeling... or these things can't and won't happen.

So then i don't get to appointments, I don't get food and eat it [and actually this is sometimes the case], I keep it all inside and feel even worse- like I'm going to explode. Sometimes I scream into my pillows.

I don't have a choice. But then people look at that and say I'm misrepresenting the situation.

I have no idea what I'm on about here.
I'm frustrated and afraid this is the rest of my life- um. That may, by some weird default be true... It isn't pain that is intolerable. It is THIS level of pain as a fairly constant element that is becoming intolerable. PLUS that i can't function much with it. Which means NEVER having money. Which means never eating well- which creates more problems, frustration, depression, unending medical bills. On and on and on.

At a certain point, it's like it isn't possible to just care yourself into wellness, no matter how "high functioning" other people want to classify you. That's not the reality of the situation.

This rant has been brought to you by:
FML
and
"Apparently I can't speak coherently anymore. That's a new thing. Again.".
_________________

9.12.2014

I kind of started crying in CVS

I say kind of because it's hard to like, have a good sob unless you are just full on hysterical.

It's like, you turn away from the magazines with Robin Williams on them and then you are looking at plastic grinning pumpkins, right across the aisle from the last remnants of insulated drink cups, cheap beach chairs, 5$ sun dresses. When I realized I should stop looking back and forth from the grinning pumpkins to Robin Williams, I happened upon the sparkling water display which was relatively low-key and managed to kind of gain my composure.

But what had set me off was Robin Williams. Only... not Robin Williams. What set me off, and I'm going to try to explain here, was so many of these things that hang out behind everything else in my head all the time.

I saw a picture of "older" Robin Williams next to his "younger" self. And he has really blue eyes... My best friend had a baby almost three months ago and I love him a lot. He has really blue eyes and I do too. That's probably never going to be me, with a baby. I've known this for a while- and it's not one thing. It's not any of the neuropsych stuff. There are a lot of physical health issues involved.

But there's that. There's that he was a "funny guy" and while I am no Robin Williams, I just have to use humour to deal with everything. With pain, heartache, sorrow, anger, angst, misery. Depression so deep and vast that I can't breathe- but I can make some sort of half-funny comment. Apparently.

There have been so many times that I talk to my best friend for over an hour and we talk about mundane stuff: "I need to get my hair cut" "I didn't sleep well last night"...but the reality might be that I had been struggling that whole week, but that day in particular with a whole lot of "life sucks" and needing to tell myself and really try to convince myself that even if only logically, killing myself probably isn't the way to go.

I'm typing this now and stuff really really hurts- my hands are hurting, but if I don't try to get it out... like I've been trying to for days and days, I don't know maybe I'll implode.

Robin Williams took his life on my birthday, and while I don't think that is any special sign or anything like that, it had an impact.

I am not sure I can even verbalize the impact it had.

I am generally a positive person. This is actually severely rejected in our society. So much so that I generally actually get less bullcrap thrown at me when I am depressed or pissy, then when I am productively positive. Considering I can't actually be on any antidepressants that are effective for my depression, and I'm bipolar, and winter is coming [again]? this is going to be fun.

I also have pretty bad OCD. I am on basically the minimum amount of medication I can be on for the OCD an be functional, because the meds tend to lower my seizure threshold.

I'm scared about winter coming, because I am scared of being cold all the time. My joints and most of my body is in pain to some degree and I am managing, somehow, to kind of maintain some sort of positive outlook [which is my predisposition, but still]. But that is sans anti-depressants, also sans blistering cold weather.

Lab test indicate that I am looking at RA and lupus right now, pretty likely. Also seizures which may or may not be controlled, and migraines which are unpredictable. The ~RA and ~lupus combine for a lot of fun stuff, and meds thus far are not effective.

Stuff really really really sucks.

I actually feel really alienated most of the time in most situations and just fake the hell out of it. It is exhausting when you can't understand what people are saying, you have to smile and nod and people EXPECT you to do this every time and if you have a problem it's you being a jerk.

I actually get perceived as a jerk a lot.
When you have like, no energy and personal resources though... you kind of can't mess around with giving what little you have to everyone else.

Which I've learned... but I've also learned that like, if you don't act a certain way, you are perceived as an A Hole. You can be kissing someones toes but if it is not while commenting on their toenail polish, you are rude.

I could go on and on. But I won't.

Ironically, this entire rant was prompted by the recurring feeling that I'm not actually supposed to say anything ever. Which is difficult when [like a lot of people on the autism spectrum, I think?] you have a really strong sense of "right/wrong; fair/unfair; kind/unkind, etc".

So then I get stuck in this thing where I don't think I'm supposed to say anything because it will upset people but then if i don't say anything it's not fair to OTHER people.

Then, no matter what, I'm an ass.

9.09.2014

Nature is cruel but we don't have to be [Temple Grandin]

[Please note: I had actually written this a year ago, but it was never on this blog]

Often when an individual is shy or awkward or finds it difficult to easily engage with others, the line of thinking often ends up at a stop called “Asperger’s”.

This is not a terribly far leap of logic, though the concept of Aspergers as a separate diagnosis entirely is no longer being recognized- at least officially in the United States and generally in Western countries which follow diagnostic criteria of the DSM.

With the introduction of the dsm5, all distinct diagnoses formerly falling under the autism spectrum have now been subsumed under the large umbrella of Autism, to be classified as a broad spectrum disorder… which seems to be a growing trend.

With all that said, I am actually autistic as opposed to having Asperger's. “High functioning” autistic, to be more precise- a term which is not used in a standard fashion and which can cause much misunderstanding. I was, however, diagnosed as such several years ago and this is not a case of Asperger’s being swept into the current DSM5 confusion.

While many diagnosticians would like to say- and often do say to save time- that the only true difference between Asperger’s and HFA [or High Functioning Autism] is that there is no language delay in Asperger’s, the truth is a bit more complicated.

While language delay is a very relevant factor, social difficulties seem to be more often a standout issue with Asperger’s while HFA will more often have a larger grab bag of issues. I will expound upon that shortly.

That I am autistic, I do feel I have some relevant commentary on the issue. Beyond that, I also did quite a bit of research into the possible manifested clinical differences between individuals diagnosed PDDNOS vs HFA vs Aspergers.



Someone said the other day that I don’t “look” autistic, because I did actually mention that I am autistic. They took one look at me and made the aforementioned comment.

I don’t seem to fit any of the strangely shaped boxes that people build for themselves and label “autism” (quite often before ever meeting someone who is autistic) so I end up defending my diagnosis instead of discussing my experiences as an autistic individual. To the point where I generally just tuck that part away inside me.

A little background for general info, so you [ as the reader] can decide whether my experience may be relevant in your view: I was not diagnosed as a young child, but I have been diagnosed and had it confirmed several times based on the results of neuropsychological testing, psychological, academic and medical reports as well as personal reports and reports of those familiar with me. All of these records [neuropsych testing, psych, school and health records, as well as parental and personal reports] date back to when I was about four or five to the most recent testing.

Including those making and confirming the diagnosed are a well known and respected professional psychiatrist in the field [no I don't name drop so as always, make the decision for yourself whether what I say is legit or not] and a very prominent hospital. It is not particularly important to me that I be a poster child for autism.

What is relevant to me are some of the challenges that are associated with it, that are not restricted to social issues. That is a common misconception.

My experience though:
***I have problems with recognizing and recalling faces. If I know you for years, this is not so much a problem, but if you get a drastic hair cut or color change, you should talk to me as you approach me because I will recognize your voice much easier than your face. I’ve learned though, to pay attention if someone has a distinctive walk or a favorite hat or unique piece of jewelry. If someone approaches me in a generic setting- like a grocery store- I don’t usually have a context for how I know them. They could be my neighbor, a coworker, a fellow student. If all they say is “hi” and give me an expectant smile… there is high potential for panic, upset and insult. You can try to work around that, but sometimes you just piss people off. If it is an important academic or similar contact, you can potentially REALLY screw up. But, oh well? Ha.

***I didn’t talk really until I was closer to four than three. I think that, combined with all the extra stuff involved in having an auditory conversation (tone of voice, pushing, turn taking, interpretation of tone, sighing, coughing, little indescribable noises…), PLUS a bit [ok more than a bit at this point] of auditory processing messiness that can be common with autism makes spoken communication a bit more challenging. Even more, I suspect, than it might be for the average person. There is often an ebb and flow that I might not have the hang of. I can miss pertinent information. Other people are intuitive in a conversation,I have to be analytical and it is DAMN EXHAUSTING. Sometimes when I say things I forget to attach all the appropriate bells and whistles that make it easier for other people to hear, but are often nnecessary for me. That has variable results. Because of this, by contrast my written communication seems to excel.

***Visually, I can have difficulty interpreting my environment. I don’t always see a picture as a whole scene. It just looks like different things and I can’t gather the meaning through a connected context.
If you saw a bunch of beige string in a five year olds hands, she was sitting on a picnic table, there was glue and scissors and art supplies around… You would know it was beige string. My brain will not always piece together context clues.sometimes I wonder why a little girl is sitting in a park on a hot summer day laughing and hold a handful of spaghetti. It can be disorienting.

***change is difficult. I don’t mean inconvenient. I mean, inside, it can be downright traumatic. But it’s not ok for a 31 year old to throw a total meltdown tantrum in a store because they stopped carrying the only conditioner I’ve used for the past five years- in fact no one carries it, because it has been discontinued. I’ll get the cops called on me. I’ve had to train myself to in the very least freeze that nonsensical turmoil, that is almost a primitive reaction, and try to find some kind of soothing safe space or activity or something. It’s upsetting. And it’s upsetting that it is upsetting. I feel I’m a reasonable person and then inside of me flips like a five year old in a candy shop? It’s pretty awful.

***As with change, new things are difficult. They strike right at the heart of everything that scares the crap out of me.

***It is better now, but for a while I had quite an uneven profile of ability. ...and I guess, I mean "better" is relative. My activities of daily living were pretty pathetic. I had no ability to clean or organize my room- it was not for lack of trying. My brain literally could not provide me the skills to do so. I couldn’t especially cook, I was afraid of using frying pans (I actually wrote a post about that), there were a lot of things that people take for granted, so I was never explained how to do them. So I couldn’t cook myself dinner but would be writing research papers on like, the cellular lever of a neurological disorder… and that is very typical of moderate to high functioning autism.

***I have had a history of fine and gross motor control retardation- it matured slowly, and is now not really as much an issue. I do think there are some coordinated activities that I have to put more conscious effort into, though and my dexterity may be a bit lacking with some things. But again, this is not unusual for those with autism. It likely accounts for a lot of the general “awkward” discussion surrounding aspergers and autism but I think there is misconception regarding what the awkward terminology actually refers to.

***it took me a long time to emotionally mature and this was very very obvious. I didn’t really feel very ready to understand and handle particularly serious romantic relationships until I was maybe 26 or older, and yet found myself in them, which was a bit difficult.

***structure in life generally and in schedule as well as executive functioning are also abilities which have been a long time coming and things which have necessitated at least partially active effort to improve upon.

So while social dysfunction and difficulty is certainly a part of it, and by necessity comes into play because of other aspects… it is not the whole syndrome. Or most of it.

In some cases, very severe social anxiety may be mistaken for being somewhere on the autism spectrum.

There is also a saying: if you have met one person with autism… You have met one person with autism.