aspergers

523: Aspergers and the MTHFR Gene

| Aspergers Girls

It’s been over a year since my five ER visits and week-stay at the hospital. I am ready to be proactive again in regards to my health, even as I have lingering post-traumatic stress from the care I received while in hospital, e.g., not believing I was sick, accusing me of creating my symptoms, referring me to psychiatric care, insisting it was Fibromyalgia, refusing to do tests, refusing to keep my hospitalized for care, etc.

Turns out, after a two-hour tilt-table test at the University of Washington Hospital and conclusive evidence read by a specialist that indeed I do have a ‘real’ condition. A condition closely related to POTS Syndrome. The key for me is to keep up my potassium and sodium levels, stay hydrated, and not over-do it. I drink lots of coconut water and take pink Himalayan salt and a variety of supplements. I was also diagnosed with joint hyper-mobility syndrome (possibly EDS) which is a probable cause of my POTS-like Syndrome.

My symptoms prior to going to the ER last year were weight loss, hair loss, loss of appetite, neuropathy of all limbs, autonomic dysfunction (including digestive pain, not being able to sleep or sit up, heart rate of 160 standing/120 sitting), chest pain, mid-back pain, all over fatigue, weakness, shaking, and generalized pain. I’d spent a good month in bed before the symptoms worsened. Also, I had signs of dehydration—white tongue, etc.

It still amazes me the doctors thought I could control my heart rate, and literally make it go from 90 resting to 160 standing and back down to 90 resting. They must have thought I had super powers. Or they just didn’t want to face facts that I might have a RARE condition!

Anyhow, because of the stress of being in and out of hospitals and seeing multiple specialists, I never wanted to see a doctor again in my life. I have since, but not because I wanted to go.

However I am ready now to get some blood work done, after briefly reading about the MTHFR Gene. (Thanks to a reader for telling me about it.) I have been trying remedies for years to rid myself of depression, fatigue, pain, and the like, particularly related to PMDD. This gene could be another piece of the puzzle. And if so, folate treatment could be the answer. I have listed a few links, the first ones that I found that helped me to understand the gene’s role in our bodies.

PMDD, POTS, and EDS (Ehlers Danlos Syndrome) are common with people on the spectrum. I thought this gene was worth mentioning, as well.

I started going back into my far infrared sauna today, too.

Another reader said MTHFR looks like MOTHER F***ER… which made me giggle.

Okay, here are the links. Step-by-step we are finding answers.

If direct links aren’t working, copy and paste.

http://mthfr.net/mthfr-resources/

http://www.nwimed.com/mthfr/

http://www.doctorbecky.net/mthfr.shtml

Much Love,

Sam

522: Outside the Isolation of Noise

| Aspergers Girls

I am much like a computer. I know that. I feel it. I sense it. I hear it. I take in more than most could feasibly comprehend, and spit out just as much. I need to process, both internally and externally. If I do not process, I will explode. Not literally, but definitely by means of emotional shutdown, spurting out, or losing myself in looping cyclic thoughts. I need to be heard by others, and indeed by my own interior self. I also need to reflect a form of truth.

I partake in communication akin to a hunter stalking her prey. I am in search. I am digesting the elements. I am preparing myself for future claim. I am reflecting, too, on past hunts, and bringing the memories forward for analysis. To exist is to hunt—to search for the meat of the matter and pull it outward from within, and to furthermore seek out that which is externally available for clues so that I might make my way through the forest that is my world.

Everywhere are trees. They are thick and mossy. They are stoic. They are alive. And each tree stands with a thousand secrets—some spoken and some hidden. And in this way I move about listening. I cannot be without the sense of everything bursting with input. There is a non-surrendering aspect in regards to my thinking. Gallant knights at the wheel of knowledge aching for an answer they know does not exist, and yet, they, these rouge-pages-blossomed, chase time away in a merry-go-round of maybes. I cannot stop them, and I, the someone beyond them, am left victim of sorts, incapable of surrendering for the lot of us.

The forest makes me blind. I cannot see through the trees. And the knights make me bitter because I cannot rest with them at the reins. I ache like none would know, unless too trapped in the wooded causeway, reaping what is taken in at high-speed but smothered by the incoming. I get trapped in overload. Trapped in a glass-bowl incapable of knowing what is what, what is important, what is true, what is necessary to process. A fish with no water, yet still swimming in this notorious muck of something deemed needed by some distant part of self. I can’t get out, but I want to. And part of me doesn’t even recognize I am there. Part of me can’t tell if I am even here, where I seem to live in this land.

I am nowhere, in moments, true. Essentially lost to my own buried selves—the multitudes of me who are shuffling through the debris of information. Each questioning the other for validity: “Is this the accurate representation?” “Is this a true source?” “What is beyond this source?” “What is truth?”

The knights battle inside as I move through the whispering trees—further aspects of self sprung up through the gatherings of words. They multiply whilst seemingly traversing into a battleground of truth; each contemplating while incorporating the strongest voice in hopes of victory. A win for the team. A win for silence. The totality of self pushing towards peace.

There is chaos, interruptions, non-stop contradictions, quibbles of sorts, and primarily confusion. Yet, no matter their futile attempts, brought up to the forum of exclusion, they waver away from the foundation of adequate representation fortified by truth. This nothingness of beyond bearing down its weight upon the galleries’ guesswork. And thusly, re-measuring occurs—long rulers and yellow tape stretched out in endless mayhem—judgment and discernment in regards to what is set out as evidence.

I cannot find peace here, and still I travel so. My only outlet found in emotional exhaustion, high-energy spurts of fixation, or the letting out of my soul in form of discourse, be it writing or speaking.

And so it is many times in words and tears and high-interest, I typically find reprieve. I don’t know why or how, or the ways in which I work beyond what comes forth as fragmented awakenings. I only know that I live most hours amongst the churning of selves in the shadows of the talking forest longing to be heard outside of the isolation of noise.

521: No Harm Intended, and other aspects of this Aspie Girl

| Aspergers Girls

No Harm Intended

Anger:

When someone gets mad at me I feel like my world is coming to an end. I literally do. I have thoughts of ending my life, about how worthless I am, and about how I am not fit or made for this world.

Conflict confuses me. Anger scares me. And any type of disagreement makes me wonder why there is such a thing as discord. Particularly scary for me is the silent treatment, withdrawn emotion, or the ‘cold shoulder.’ It’s not the action or words that scares me, not even the person, it is the way my brain responds.

During conflict of any type, I go into hyper-speed and live through the worst-case scenarios, having flashes of all the feasible most horrific things that could happen as a result of the situation. I experience my thoughts as complete visuals—full on scenery, liken to vivid dreaming, with emotions, sensations, full color and sound. I experience multiple mini-scenarios in a matter of seconds. And I come out bewildered and exhausted, and barely able to focus. With all of this, I have this emptiness as well. When I am triggered by conflict, I want to make a plan and make a plan fast. If I have a plan, I think I will be okay. I will find my way out and survive. If I don’t have a plan, I find it hard to concentrate on anything else. In order to have a plan, I must first evaluate the situation, find feasible reasons why the event is happening, and then set about to find solutions. I get stuck at each step, push myself out and then loop through again. My entire worst fears surface. Without doubt, I know it is the end. It feels like a death of sorts.

I am not afraid of the fighting itself. But I am very terrified of how I will react. I know with certainty I am not a wimp or codependent. I stick up for myself and state my needs, set boundaries, and make choices to protect myself. I am not afraid of hearing about what is on the other person’s mind or even taking constructive (or not-so-constructive) criticism. I am not afraid to fight back verbally, if I feel threatened. It’s none of that; the fear all has to do with the inner workings of my mind and my response.

Authenticity:

I want to be myself entirely; so much so that the times I think I might not be behaving with authenticity, (e.g., using a tone that doesn’t reflect my inner thoughts and emotions), I beat myself up mentally. Inside there is some self-set standard of how to behave. If I am not true to myself there is a nudging inside that sits on me like the weight of a sandbag. How this heaviness exists and why it comes, I don’t know. How it determines right or wrong in relation to my inner ‘true’ being, I know not. With so much ‘not knowing’ going on it is amazing that this regulator of authentic self still exists. But it does.

In judging my authenticity I look at everything about my representation of self, including the way I walk, the way I talk, the manner in which I present myself, and each and every word I use. I do this repeatedly before I speak sometimes and always after I speak, wondering if what I am representing of self is self. I don’t know why this is so important to me—the act of over-analysis of self to find truth and authenticity—yet, I am psychologically locked in the same room as truth-seeking.

There are times I fight the being ‘real’ and want to turn it off, many times. There are times I want to tape my mouth shut and not speak. I can tell myself, even promise myself profusely, that I will not tell someone something. (This could be a simple fact, an aspect about myself, another or an event, a conclusion about an emotion, a revelation of sorts, or information that reveals an intimate aspect of a given situation.) But it doesn’t matter how I try to stop the train of what is words coming out of me. For despite my best attempts the locomotive comes, charging in with full force. And then I step back and think: “Here I go again.”

Truth:

I can’t live burdened and in that way I appear selfish. But the truth of the matter is I don’t want to be this way. There is another driver beyond me: a director. He is the one making the calls. Personally, this me, this person now that is consciously aware and writing, she would like to stop, she would like to remain silent, she would like to keep something to herself, but she cannot. She isn’t ‘allowed’ to be false or non-genuine. She isn’t allowed to house secrets.

She is sworn to this all-encompassing law of ‘the truth shall set you free.’ Only the truth is confusing. Only the truth can be convoluted and mixed up and come with a whole bunch of strings attached. The truth can be buried under an avalanche of ego-will and manipulation and selfish desire. The truth can be jaded by subjective perception and personal collected truths.

Yet, to be as authentic as possible, the truth itself must be unmasked, dug up and examined. Here in lies more work for my brain. For all at once, in conversation and outside conversation, I am examining self, looking for clues of dishonesty and non-representation of authentic being, while dissecting the elements that classify true truth.

As a result of this instinctual given necessity to walk through the world as a genuine representation of me, I can’t lie without deep regret and remorse; for the act of not being true feels like a direct affliction to my being, as if I wound myself in the process of falsehood. I have lied, usually in times I am trying to protect another, think I am protecting another, or confused, lost and overwhelmed. I have lied, and in the act felt wounded and wrong. I always regret and relive lies, in a perpetual purgatory, no matter how small or how well-intentioned I thought I was being.

In addition to outright lies, I can’t tell a partial truth without partaking in deep reflection of why I did such a (terrible) thing. I concentrate on the elements I left out of the telling, the whys of why I only told half a truth, justifying and then punishing the act. And I do the same if I leave out a detail of a story. For instance, in recollecting my day to someone the times events occurred must be exact. To say even a minute less or more, or a time a few minutes off, seems wrong. The details must reflect the truth of what I recall as much as possible, not too complex or too long-winded, and not ever leading someone in the wrong direction.

Reviewing Speech:

After I say something, like a sentence or two, to another, I go into review mode, a whole audience stepping in to decipher if what I said was 1) true 2) based on the best of my recollection 3) reflected from a state of wanting nothing in return but to be heard 4) lacking selfish motivation, manipulation, or covering up of any sort 5) not said to win someone over or gain sympathy 6) not missing parts that would take away from the true meaning or events.

While I am in review mode, there is a background interpreter 1) reliving the past events through a pictorial overview 2) rewriting a script of how I could have said something in a more authentic or kinder/loving way 3) watching myself go back in time and correcting what was said to better amplify truth 4) justifying said actions and suggestions through connecting back to previous learnings.

Need I say this all gets rather exhausting?

Linear Dialogues:

My linear dialogues are parallel and happen at the exact same moment. I am endowed with the capacity to triple- or quadruple-think. That is to say I can process several thoughts along separate lines at the same instant. So while one process is happening, so is another. And there is a finite goal to this reasoning, in which the lines of thought are straight and contain their own predetermined want of outcome and motivation for completion. I am along for the ride like a passenger traveling on three trains simultaneously.

Someone Observing:

The linear thinking on multiple parallel levels happens continually, in all conversations, and even in quiet moments of stillness when I am reflecting back to previous events. I also do this with my thoughts and behaviors when I am alone, sorting through this maze of how to be, as if there is a higher power checking in on me for my authenticity, or another person standing in a far corner observing me and evaluating. It is more natural, in fact, to move through the day with an imaginary overseer watching, then to move in the absence of no one but self. In some ways I don’t know how to exist without thinking I am observed. I am not paranoid. I don’t think someone is actually there. I don’t think I have to behave for them. I only feel I can’t watch myself, or be myself, or move without first seeing myself through someone else’s eyes. It’s always been this way. I am a participant in a game of hide-and-seek, not hunted, just found—again and again.

No Intention to Do Ill Will:

To some I might seem selfish or manipulative or purposeful in my intention to harm. But to me this is impossible. I simply cannot cause harm on purpose without great detriment to self.

I have tried to be angry on purpose and it doesn’t work. I have tried because in watching others it seems easier to live in denial, deflection, blame, rage, finger-pointing and the like. To be able to not fall into an abyss of self-evaluation, self-blame, and over-awareness, seems key. But I have surmised that I am only me when I am authentic, and in so being authentic and in so knowing the whys of how I act and how I feel, I cannot place blame on someone without denying a part of myself that knows I am always partially responsible.

I can’t hold grudges. My anger only comes when I am confused and overwhelmed or dreadfully scared. And so when another person is mad at me, if she or he accuses me and confronts me for being selfish, or purposely deceitful, or callous, or any a number of things that I avoid at all costs, I don’t understand.

I don’t understand how they can see me that way. I don’t understand how they don’t know I am constantly seeking to be my best. I don’t understand how they could ever, ever think I would harm on purpose.

520: Far: Aspie Thoughts

| Aspergers Girls

Far

I think far out in advance and I often lose myself while in the process. When I am in deep thought, I might appear unaware, aloof, standoffish, and entirely uninterested in my surroundings. In some instances I might seem hypersensitive or over emotional, but in truth I am somewhere in the background of the contemplative process, almost absent to everyone, including myself.

Much of the contemplation happens in a cohort fashion. There is a hidden part, a machine that constantly evaluates, and somewhere I, or my conscious awareness, sits behind the machine. This ‘machine’ is why all of a sudden I might ‘check out’ mentally and leave any company behind. This ‘machine’ is why I might eventually have a strong impulse to exit a particular person and/or environment. This machine is why sometimes I start to cry and do not know why.

Sometimes certain environments will lead to deeper thinking. Other times I will be practicing so hard being present and alert that when an event is over I collapse with debilitating fatigue. When I am in an over-stimulating environment, (such as new surroundings, new friendship, new people, crowded places, unexpected happenings, confrontation), I become overwhelmed with data. Part of my brain likes to collect, another likes to organize, and still another relishes itself in connections. Sometimes whilst collecting, organizing, and connecting information inputted into the ‘machine,’ I soon become an exaggerated version of myself, some downtrodden detective who has dug up one too many clues and needs an extensive reprieve from her vocation.

In moments of ‘too much data,’ which could be the result of something as simple as one text message, I might appear aggravated, sad, confused, or even angry, but inwardly I only feel one thing: lost.

My mind is constantly solving. Much is taken in and processed through the senses, but I also cipher through and digest past collected facts and personal memories in three-D picture form. I make constant connections, experience acute and distinct bodily sensations, monitor hunches, respond to my instinctual fight-flight internal mechanism, and more. With all of this processing, being in the moment and in the now, is vanquished by merely existing.

When I find myself outside the sanctuary of a safe place or beyond structured familiarity, the internal processing intensifies, and in defense of my own machine, I slowly slip back into myself. Even when I am in safe and familiar surroundings, my mind is still on overdrive. For what appears to be not-so-important choices, (what to eat, when to get gas, when to make a phone call) feels like life or death decisions. I know logically ‘to not sweat the small stuff.’ I know logically most things are not a big deal. But somehow I get carried away into thinking each decision is a big deal. I know easier choices could be said and done with barely a thought. But to me the choices feel insurmountable. Even the choice of how to walk, the speed of how to talk, the way in which to breathe, play out like a drum corp. Sometimes the choice becomes buried under other choices, as I reason my way through something, pulling out random tools from a series of toolboxes varying from nutritional know-how to spiritual belief systems.

In relation to choices, I also have this ever-building blueprint inside, as if I am writing out a series of steps as I go about every minute of my day. Even the way in which I brush my hair, load the dishwasher, or unload the groceries is broken down into strategic steps, occurring simultaneously to when I move. I don’t just DO anything. The same goes for my thinking. There is a director overseeing my thought process, constantly. There isn’t time for rest, because even as I seek retreat, some part of me is remaining at work and on guard.

I can become stuck in a state of inertia when the director gets stuck inside the data, or stuck within the elements of the live-blueprint, tangled in a labyrinth of what he/she deems actually right and wrong. Here, every choice gets tricky. Here the ‘how much,’ ‘when,’ ‘why,’ and such play out. Here the voices of how to be come in, and how to be the best me.

Everyday life choices are many, sometimes reaching hundreds in the matter of an hour. This creates the data overload, this creates the retreat, this creates the sinking into myself, and the need to escape and/or find relief. Often my only relief is found in a special interest, fixation, or hobby.

When I am in a state of contemplation, I also have a frozen-time-bubble that serves as a vehicle, like a time travel machine. Inside those thoughts, I have the ability to stop time. I have a sort of super power in which I can visualize my thoughts as flash images at fast speed, and jump ahead and live visually through possible choices and events. I can do this at a rapid rate—let’s say projecting into the future and seeing ten feasible scenarios almost all at once, within seconds. Because of this, to the onlooker, I might not appear as though I have a reason to support a decision made quickly; when indeed, to me, I have taken ample and proficient time to evaluate a given idea.

This happens all day long. Even a lonely drinking glass on the kitchen counter has had a half-dozen feasible futures, just from my quick glance—he could be used again, he could have been used by someone in the house with an ailment and needs deep cleaning, he could be rinsed and placed in the dishwasher, he could be soaped up and put in drying rack, he could be used to pour water into the fern plant, he could be thrown out because of that small chip—now or later?

The way I process also makes me sound like I am purposeful being more argumentative during a disagreement because I say several things at once aloud and come off like rapid-firing. I don’t mean to do this, but I do it just the same. I make fast and abundant connections based on what the other person is saying, and then speak what I am seeing. I am thinking so fast, and processing so quickly, that I barely have time to examine my thoughts myself. But it all comes out in one giant heap of me sounding like I have all the answers, or looking lost, or acting overwhelmed.

When I am in a state of continual over-processing and bombardment of information with little relief, particularly in what I perceive as a fight/flight situation or a confrontational situation in which my actions or words have made another person frustrated in any manner, then I start to doubt who I am as a person. I doubt that I function normally. I doubt that I am ever going to be able to be happy. I doubt that anyone will have the patience for me. And from there I spiral downward.

I often want to say: I don’t mean to be the way I am.

519: By Default

| Aspergers Girls

A relative of mine once said:

‘Everyone is selfish, even saints, because even if you are serving others, but ultimately you do it because it feels good, then that is selfish.’

I am pretty sure he is an Aspie.

People with Aspergers, particularly females with ASD, sometimes fear they are self-centered, selfish and/or narcissistic. The fear of self-centeredness is indeed one of my mental fixations—meaning I sometimes obsess about the fact that just being a human makes me a little narcissistic.

When entertaining thoughts of selfishness, I go into this weird cock-eyed, inertia state of over-analysis. Nothing new. You can find me on the couch in my Sheldon-like spot, staring into oblivion, biting my lip, and sighing deeply as I turn around conjecture-corners of reason, fearing once again, I am hopelessly self-centered. Tears come, then, as I further punish myself thinking this is just another exhaustive performance of ego, feeling bad about feeling good. And that maybe I am a genius narcissist in my ability to feel bad about maybe being self-centered.

Once the narcissism trigger slaps me, this whole looping-grasping tango starts, a looping process I have previously bleated out in abundance through metaphoric-saturated analysis, a state of mind in which I once again gather all the ‘truths’ from my memory banks in a futile attempt to decipher what is indeed fact and what is not fact, knowing all the while there are no endpoints. Thusly, the modifier ‘futile.’

This analysis of aforementioned subject matter involves bungee jumping through deductions, including thoughts of: a) life is an illusion, b) DSM-V is largely controlled by pharmaceutical purse-strings c) most ‘conditions’ overlap one another d) family dynamics, diet/nutrition, depletion of our natural nutrients in soil, pollution, chemical-poisoning, infection, mutated swelly-breasted chickens, etc. affect our minds e) genetics f) quantum physics, multiple universes, string theory g) the fact that electrons and living bacteria in yogurt respond to an observer’s thoughts and emotions h) and if the statement near letter A listed above is true then the rest points listed are a moot point

Then I start to over-analyze me, knowing far too much about the literature in the mental health genre-bowl in general, and knowing far too much about me (see previous 600 pages), and having housed psychology and counseling as my special interest pocket for most of my life. (My mother worked for the family therapist Virginia Satir; and I was pretty much swooning at the thought of emulating her since the age of nine.)

I think I have been paranoid about the possibility of losing my mind since I first sat hunched over in a bush (literally) at the age of eight, contemplating the vastness of the universe and what was outside the universe. My son with Aspergers is similar, but ripened earlier than me; he asked me point-blank while twirling his toes in his car seat (age three), “Mommy, who birthed God? And who birthed that person? And how do you know?” So there’s that.

My point is that I have concluded over and over that there are (infinite) murky areas in the realm of mental health; so if anything had the capacity to drive me batty, based on the subject’s lack of pinpoint-ability in regard to conclusive evidence, it would be this psychological mumbo-jumbo matter.

Of course, I realize, some people, regardless, require medication for their safety and the safety of others, and/or to function in life. And yes, I have empathy for those people, some being my friends. But I wonder where the lines are, as everything seems to bleed into the next, and so many people have their different theories, answers, and remedies. It’s very much a disaster for anyone with a mind like mine to even consider all the loopholes and unanswered questions in regards to mental health. I guess I am glad I have a neurological condition, and not a ‘mental health’ condition (yet), because, as we all know: neurological conditions are so cut and dry! Hahahaha!

(I am wondering what cut and dry means, and for some reason picturing a pioneer woman hanging raw meat on a line of string. Beef Jerky! Gasp. We are so much a conditioning of our environment.)

Anyhow, if you are an Aspie Chick or an Aspie Rooster rest assured you are likely not narcissistic. I don’t know for sure, but I’d say if you are constantly worried about it then there’s a good chance you aren’t. Chances are you harvest far too much genuine love for people not based on your own self-gain, and that you over-think that you are too self-centered. Also, there’s a possibility, too, if you are like me, that you get down on yourself, not because you aren’t elevated in status, or not performing well, or not gaining attention of peers (narcissist’s idea of failure), but because you are or might be! Goddess forbid if someone pays attention to me in a positive way! It’s like we have this humble-stinger stuck in our butts! Oh crap, I feel a little good about myself, someone noticed me, someone complimented me so……..something must be wrong with me. Self-inflicted gluttony commenced—whip, whip, whip.

I mean seriously, I don’t know how many times I have cried about how afraid I am that I might be too self-centered. I mean I know I am self-focused, because I hyper-focus on everything, e.g., other people, special interests, fixations, pending danger, the fly on the wall, the speed in which I type, the grumble in my tummy, the octave of the fridge hum, etc. And I just happen to be another focal point, and also a case subject (guinea pig) for my own HUGE special interest: Aspergers. So following the logical dots, then yes, I am my own special interest, but by default. Seriously, I’d much rather jump into your mind and write about you. Any takers?

Trust me, I go into these weekly fits of self-loathing and wanting to stop writing in which I wish to cash in my creative hankering for the life of a meditating (naked) Zen hermit who does nothing but focus on light.

On the same topic, interestingly enough, my fifteen-year-old Aspie son, no longer in his car seat, said to me a few days ago: I think I might be slightly narcissist because I realize I care more about the enjoyment I might feasibly gain from a new gaming system than the other things we are talking about that other people would think matter. But that doesn’t bother me.

I gave him a reassuring, logical response.

I wasn’t doing him any favors.

He’d already concluded, within seconds:

“Narcissism is part of the human condition and without people who were hyper-focused on their own self-interests nothing would get done in this world. I find it best just to accept the illusion of life and enjoy it as much as I can without purposely causing harm. I see it. And I accept it…The world doesn’t really have any antagonists.”

Okay, so I definitely think he’s smarter than me.