523: Aspergers and the MTHFR Gene

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

424: To the Girl in the Altered State

To the girl in the altered state

Every once in a while, about six to ten times a month, I enter an altered state in which I cannot recognize or reason with myself. Mostly this happens during the week before my menstrual cycle, but also occurs sporadically throughout the span of a moon-cycle. I am not separate or without consciousness of experience during this altered time, but I am definitely separated from a healthy self-image and from a sense of hope. Partially, this state of being can be explained through the symptoms of PMDD and/or severe PMS. Partially, this altered mood state can be explained through environmental influences, such as exposure to people, foods, weather fluctuations, and events. Causes of the root of these states can also be found through the intake of others’ words, actions, body language, moods and emotions. These altered states are intensified, if not jump-started, by the complexities of my thoughts, including my innate ability to scaffold one thought upon the other, and then root my ideas through advance complexities of processing equivalent in design to a skyscraper building upward and outward with exploding and expanding firework-like threads.

Inside my mind is a jumble of ideas edging their way through to exactness and refinement, entering a filter of dissection and biopsy, spit out into a conveyer belt which feeds each piece with microscopic filaments of possibility. As my mind functions much like a separate entity of its own, I get carried away in the potential outcomes, swept into immensely thick images and awakening, I can both feel, create, and to some degree control.

Here is the only place I find a semblance of control, and because I can find this peace, this place of no unexpected upset, but instead a returning again and again to the matter at hand–this machine of causation digesting and reproducing with each throb of my heart—I can remain here unaware of the happenings around me, the things occurring outside of my own thinking.

This serves me well, my thinking-machine, in times of deadlines, needed production, problem solving and sorting. I have the capacity to debate both sides of an argument with ease, essentially seeing with expansive foresight the end-trail of either avenue taken. Whether I be supporting myself or another’s endeavors, I am more likely than not to typically find beneficial solutions and make beneficial progress with any given task. I am able to mass-produce with focused concentration and powerful self-drive. Nothing is forced, induced or made to happen; the output of self happens instinctually and naturally, the process akin to the effortlessness in which a flower unfolds. I am neither under pressure or in a state of panic. More so I find myself in a blissful alleyway of escape with my troubles blocked out on one side and my worries blocked out on the other. I have managed, through simply being, to slip past both the mundaneness and challenges of life, and bask in an inner-state of creation. Here, in this creation state I am blissfully working. Pouring out information in graphic and written form, both in hardcopy and in my mind. What I see is transmitted and then drafted. Draft upon draft is reassembled and reconstructed, both internally and externally. I am me, yet I am not, producing with an extremeness I am familiar with, a rush of production that seems to resemble an urgency and need, though, to the creator resembles a necessity of action—something one was born to do and must do to survive.

Given a subject, I can learn mass amounts of information in a short amount of time, not because I am told to or want to, but because I am internally driven to completely fill the vacant spaces in my mind with input. I am taking in what I crave, as if the newness was the exact food I needed. I have nothing to prove to anyone. And thoughts of improvement of self spurs feelings of the potentiality for pride. This pride feels like poison to me, indigestible and damaging to the whole of self. I create with passion and fever, but not for the reasons others might suspect. And the suspicion, the judgment, the expectations of onlookers, is the first part that disturbs what I take in. The latter part which causes disruption being the layers of guilt I wade through for being what I am in the way I delve into the alley of reprieve. Together, the meanderings of thoughts, including the knowingness of what I am and who I am (in the way I deviate from the world-proclaimed norm), the indigestible thoughts of feasibly self-filling through prideful ways, the known ways in which I appear to others through my behavior, and the guilt which soaks through, leaves me in a split state—one in which I am in the alley of reprieve but pushing back a self-punishing voice that regurgitates what I have been shown and told through experience and exposure of normalcy.

It is the processing and creation that occurs within me that both feeds me and causes the worst agony. Yet I can discard of the self-defeating thoughts most of the time, except the handful of times in which I am in an altered state and feeling low self-worth, as previously mentioned above.

During these moments, which I have called altered states, when I am emotionally at my end, sad and what could be labeled ‘depressed,’ I am tested by my own thoughts and circumstances, inventing ways to end my agony, and undoubtedly coming up empty with possible recourse and explanation. My mind takes off again, as if bound to creation with engines revved. Only this time I am digesting bits and pieces that don’t make sense and leave me suffering. I am stuck on the loop, a conveyor belt that keeps recirculating with the same information over and over. I keep misfiring inside, keep trying to solve the unsolvable, and inevitably end up disappointed and forlorn.

I can step back while in this state and feel myself adrift, unable to help or pull myself outside of a surrounding feeling of doom. Not one to dismiss possibilities or explanation, not setting aside feasible reasons, I keep forming hypothesis and testing theories through personal trial and error, digging myself deeper into confusion and darkness. The only way out is to sleep, to process verbally with another, to create through writing or art, or to cry. When I am on overload, having reinvented the same scenes again and again, dizzy and upset by my own making, I might have a panic attack.

During these times of reconstructing the same thoughts over and over, I cling to my greatest fear of the moment. For me this is usually attached to abandonment, sickness and death. I see these fears in full picture, too. And having died a thousand ways through various ailments or found myself worthless in forever isolation by all I love, I become exhausted. In theory, I suppose, I climb into a storybook of sorts, living out alternate lives again and again, wherein I am not the heroine but the doomed sufferer. If not a storybook than a vivid horror film in which the characters all dissolve and I am left alone in a sucking suffocating darkness that breathes me into a state of hopelessness. Because my mind is the way it is, for whatever cause or reason, the very tool that creates masterpieces is the same tool that creates my demise. In this way, the same control I lack in being swept into the alley of reprieve is the same tool I lack that keeps me from being sucked into crushing isolation.

Having tried various measures to offset these altered-states, I have found that some things can make a difference. But usually these measures are unexpected, unpredictable, and cannot be created through planning or intervention. The only thing that stops my altered-states is the unexpected. A few ways I am pulled out might include circumstances such as a joyful surprise, a state of urgency in which I need to help another or solve a pending challenge or expected occurrences such as a good friend visiting from out of town or a celebrated accomplishment.

Time and time again I have wished I had a letter to read to myself during this altered state. Ideally, I would benefit from videotaping myself reminding myself I will be okay because during the dark hours it seems nothing will ever stop the physical, emotional, and spiritual pain.

Dear Girl in the Altered-State,

You are here again, and you knew you would be; even though you think this is a new thing, it’s not! I know this time you think this is it, the end, the worst, the real test you will fail, the trial that will end you. Again, it’s not. You are fine. You are momentarily lost in a loop like a time traveler who has lost her way. The key word to remember is ‘momentarily.’

‘This too will pass. This too will pass.’ You aren’t going anywhere. You aren’t checking out. You aren’t crazy, and you are certainly not dying. No more than anyone else on earth, anyhow. You are a mortal and a human being and you are affected by so much in this world. You take in mass amounts of information, much of what you can’t even recognize until it is spewed out the other side through you, like some salmon flying upstream and landing on shore.

You are enough. I know you think you are not. But you are. You are pretty and smart and lovely. You are sweet and kind and caring. I know you think you aren’t good enough, no matter how hard you try and that you aren’t worthy. But you are.

In a few days you will be smiling again and loving life. Here are some important things to remember. The rest let go. All of it. I mean it. Let go of the worry, fret, regret, upset, and all that makes you mourn. Cry if you need to but don’t hold it in, and follow this list like a trail of breadcrumbs that will bring you home.

I love you. I love you so very much. You are brave and my princess, and you are never alone. You will lose your faith during this time, but the angels are still here. You will lose yourself, but you are still here. You will question everything and everyone, and not believe a positive word out of anyone’s mouth, including mine, but that is okay.

Still with all of this said, you will think this is it, the very last straw, the end of it all and the beginning of everlasting suffering. That’s bull. It really is. It’s a dark voice invented in some alley way in your mind. We don’t know why it happens, but it does. Probably a side effect of all your processing, like the sludge overspill form a well-greased engine. That’s all this is: an end result of your mind at work.

Don’t trust the negative messages and don’t make any decisions. And believe in us, in you, and finding your way back. You don’t have to do anything. You don’t have to fix yourself. You are perfect. And you don’t have to search for a way out. It will just come. The custodian is in there right now cleaning up the gunk with a mop. Just wait. That’s all. It’s okay if you are impatient and you don’t believe me. All is okay. I know that anything on this list will take all of your energy, but doing just one will help you. Remember I am here waiting, and you will come out of this altered state soon. For now pamper yourself and know you are loved.

1. Shower or take a salt bath. You will instantly feel better
2. Walk and if you can’t walk then dance to music. Move. Just move.
3. Accomplish one small task, like emptying the dishwasher, one little thing will show you that you are okay and capable of productive activity.
4. Create through your sorrow: dance, paint, draw, write, or do something that spills the emotions out of you into reality.
5. Process aloud with loved ones how you feel.
6. Treat yourself to food, you will be starved during this time, and that is okay. In a few days, once rebalanced, your healthy eating habits return.
7. Avoid the mirror and taking photos of yourself. How you view you is not reality. You are creating flaws and negative messages when you see yourself.
8. Go outdoors. Even if for a moment. Let your feet touch the earth.
9. Get in contact with nature, feed the wild crow or pet your crow, stare at the water, breathe in the air, soak in the green of your surroundings. Don’t hide out in your house, you will suffocate.
10. Allow yourself times of no production. Just be. And don’t analyze. If you need to listen to the same song over and over do it. If you need to watch a movie over and over, do it. Don’t judge yourself, your actions, or what you are doing. You are enough, and it is okay to rejuvenate.
11. Avoid triggers that increase anxiety including gluten products, coffee, and exposing yourself to people that drain your energy.
12. It’s okay to say no.
13. It’s okay to let go of your responsibilities, slow down, and take care of yourself.
14. It’s okay to cry and to be afraid.
15. Don’t try to solve, fix, or understand what is happening. It is out of your control and that is okay.

I love you, my precious one.
You are enough.

420: 10 Things Not to Say or Do When I am Sad

tree light

10 Things Not to Say or Do When I am Sad

1. Don’t ask me to explain or reason my way out. When I am sad I have already evaluated everything ‘to death.’ I have looked at the pros and cons of my own life and my own suffering. I am no dummy. In fact, part of the problem I am so sad, is because I am so dang smart. I am my worst criticizer and have evaluated all the benefits of not being sad verses being happy a thousand times, and the worst part is that I cannot reason myself out of the sadness and feel happy.

2. Don’t tell me I need a pharmaceutical drug. Chances are, I’ve done my research or tried the drug before. My body is so very sensitive that any chemicals I put into my body cause adverse reactions. I get the so called ‘side effects.’ I am that less than 1%. I am the canary in the coalmine. I am the one you read about that gets the suicidal thoughts from anti-depressants and the one that has bizarre things happening to her body when I ingest foreign substances. I am already affected by the environmental pollutants, the toxins in our water and food, the hormones injected into products, and the chemicals that seep out of most homes. Truth is, I likely would be far happier if I lived in a world that didn’t reek of destruction.

3. Don’t tell me you know the reason for my sadness. More than likely, if it’s not my PMS or PMDD, or the result of an auto-immune disorder, or a variant enzyme, an allergic reaction, a virus or illness, or something or another that is deficient or out of whack, perhaps in my intestines or stomach, then it is situational. And not just the typical situations, like a bad day at work or a letdown. I have learned not to let ‘bad’ days affect me. I have ‘bad’ moments, each and every hour, I have ‘bad’ moments, and I choose to spend my day grasping onto the light and the goodness of the day. Only sometimes, I get tired of reaching and trying. My life is a struggle to fit in, to appear ‘normal,’ to follow the ‘rules,’ to even understand the ‘rules.’ I am exhausted. I am a warrior who wakes up every day with the past day erased, all the previous trials conquered gone, all the accomplishes vanished, and I have to start from square one to try to make sense of a world in which I do not feel I belong.

4. Don’t give me advice. You have no advice I have not heard, read, seen, felt, or experienced. One way or another I have studied what you will say. I have studied emotions and reactions in films, in music, in literature, even in nonsensical jokes and in animal behavior. I understand emotions and I understand my sadness. I read to understand myself and I even study you to understand myself. I know more than you think. I may not know the root cause, but I know that there isn’t an answer you have that I don’t have within myself. Your suggestions of correct verbiage, positive thoughts, rest, fresh air, exercise, meditation, visualization, diet, supplements, and the lot, do nothing more than boggle my brain and make me think you care more about your role as a want-to-be helper than you do about my pain. I can’t be the object of your fixing. I don’t want to be and refuse to take on that role. I am not less than you in my sadness and you do not have the secret key I need. I did not express I was sad because I look to you for answers. I told you of my sorrow because I just long to feel less alone.

5. Don’t tell me what I have to be grateful for. Don’t suggest I make a list. That is crap. To me I am grateful for the tiniest of thoughts, gifts, and actions that most people take advantage of. The near site of the dew of the grass, the soft smell of the fire-painted lily, the brilliance of a child’s laugh, the comfort of my favorite blanket, or favorite song..all these lift me. So much of the world lifts me. Many moments I travel in a world so extraordinary and filled with magic that I thank life for just my essence, to just to be in the midst of such glory. My list of gratefulness is not divided by good things or bad things. I stopped judging the right from wrong, and the just from the unjust, a long time ago. I live in the space in between the extremes of yes and no, and laugh at the ones who think their view is the only view. I can’t see making a list of all that is good without classifying at the same time in invisible ink what is bad, or worse, what others are lacking. I am no less and no more grateful than the homeless man on the street. If he is happy, I am happy. If he is sad, I am sad. To even make a list seems to me pompous and unjust, to single out how lucky I am in such a world of misfortune makes no sense, unless I hold greed as a virtue. Unless I see myself as dutifully worthy based on my profiting and others’ lacking. Unless I single out what is entirely missing from another to satisfy my own growing need for satisfaction. And anything of material I would attempt to scribe as benefit, I would rather break apart into a thousand pieces and feed the world. I don’t believe I can classify what happens in my life as good, bad, tragic, ugly, or beautiful. I only know it happens, and is happening. And for what reason is still to be seen. I know to let go and let my higher source lead. But when I am very, very sad, sometimes I forget how to release; I forget how to let go of the clinging of suffering. I forget I am not alone onto myself.

6. Don’t tell me how wonderful I am. I know who I am. I know through and through. I know I am kind, gentle, sweet, generous, forgiving, genuine, giving, smart, keen, and many other positive attributes. I am not sad because I have lost sight of why I am enough. I know I am enough. I am sad because the world has lost sight of me. Because I long to reach out and connect but when I do, I often feel nothing reaching back. To touch another fully, is all I want. To touch in full extreme, without pretention, want, need, expectation, goal, or outcome. To just touch. I, as I wait in my own self-created exile, as I wait without the sense of feeling another, grow in sadness.

7. Don’t tell me ‘this too shall pass.’ I know the sayings and tons of other random words collected to form reprieve. I am an avid reader and collector of quotes. I am a philosopher, an artist, a creator. I have the heart of a lover, the mind of a composer, and the spirit of a warrior. I am brilliant in my creation, and I understand the ebbs and flows of life. I move like the sea with the moon. I move like the willow with the wind. I am affected by the give and take of the world, by nature, by weather, by other people, events, and tragedy. I dream things. I see things. I experience emotions in extremes, and sometimes cannot tell if I am carrying my own pain or the pain of another. People find me. I don’t know how, but they do. And I am a vessel of sorts, harboring the lonely through the storm. They crawl in with their tears and woes, and their aches leak through me, crushing me to the core. I know everything will pass. And I know still that life is a cycle, and like the seasons, my sorrow will come again. Do not attempt to help me to look forward to the end of my pain, help me to go through my pain.

8. Don’t criticize or mock me. I cannot help how I am. Do not call me ‘overboard,’ ‘too much,’ ‘too intense,’ or the like. I cannot help that I am the way I am. I can often control my behaviors and be the best person I can be, and I do this daily. But my emotions sometimes take over. I don’t know how or why, beyond conjecture, but they do. And the more I fight the wave of pain, the more the pain comes. Sometimes I need to submit. To be in the turmoil, so that the tunnel evaporates and the light comes again. I fret over the tiniest of perceived imperfections in the way I treat others. I judge myself for not being caring enough, attentive enough, or loving enough. I cannot lie without deep remorse. I cannot have enemies. I cannot even hate. I know not this emotion hate beyond the emotion of anger turned deep sadness. All is huge to me. There isn’t a small suffering. I hurt for the tiny spider as much as the buffalo. I long for the rescue of the persecuted innocent as much as the child without parent. I feel and take in such extreme happenings, and know not where to lay my burden down. Just as I spend all day, moment to moment, contemplating how to maneuver in a world that remains unfamiliar, I spend my inches of time trying to figure out how to again release my burden, where this time to bury my woe. Shall it be in words, in rhythm, in rhyme, in the deep wilderness real or the serenity of my imaginations? Will I get lost again in my escaping? Where shall I take this misery and when will I have my fill? Do not criticize me and do not tease me. Do not laugh or giggle your way into a stream of mockery aimed at me. I do not do what I do for attention or purpose. I do not do what I do because I want to. I do not do what I do because I am confused or made wrong. I am perfect in my being. I am just sad. I am sad. I am sad.

9. Don’t abandon me. Do not leave my side, if I need you there. Do not hang up the phone, if I am crying. Do not say you will return, and then not call. Don’t say something, and not mean it. Don’t lie to try to make me feel better. Tell me straight what you think. You covering up only makes things worse. The world is already unsafe with its lies and trickery. I need you to be safe. I need your word to be strong. I need your integrity, your honesty, your truth. I need you to be that light that I am, to prove to me again you are here and I am not alone. If you do this, if you are loyal and true, when my sadness goes, when it is lifted, I shall be at your side with the beauty I am, pleasing you in your times of suffering, and holding your hand in your deepest need.

10. Don’t perceive me as something I am not. Try not to label me. To find the answer that brings you closure. It is not my job in life to fit neatly in a box for your comfort. My moods are my moods, my pain, my pain. My emotion is not a reflection of you, nor a product of you, any more than my happiness. I don’t expect anything of you in your pain and sorrow, so please don’t expect anything of me. Don’t make me your martyr, your angel, or your giving-spirit. Don’t make me the melancholic one or the hopeless creature. I am what I am, and what you create of me is neither here nor there, no less truth than what I create. I need you to try to not see me through the eyes of fear, but through the eyes of love. To bathe me in acceptance and forgiveness. To love me enough in my completion that you in turn love yourself in completion. If you can do that, if you can look past my ‘flaws,’ past the definition and existence of ‘flaws,’ and see into my suffering the very spirit reborn into darkness, soon to be sprung into light, then I shall have hope. If I can see me as hope, I will be hope. If you can hold me as hope, I shall be the very essence that you perceive in your grasp. And we can meet there, in that space between the suffering and hope, and merge, per chance, in that shimmer of a second, as one.

352: Here Comes the Mud

Last night I dreamt two boys, my son and a friend’s son, had painted my stairs with clay-colored shit. On close examination, it wasn’t shit at all, but mud they’d dug out of the water-creek area centered at the heart of our house, the outside elements inside, below the stairs. There were shovels there; they’d been digging for water in fun, until they were scolded by my friend, the one boy’s mother, for spreading shit inside the house. She had climbed down and brought up a clump in her hand, smelled it and insisted it was crap. I, then, knowing this to be false, proceeded to the site of the wet muddy bank and scooped up my own lump. I held it to my face, with only a touch of doubt, and inhaled deeply. It was dirt. I was certain. Wet dirt. “It’s not shit,” I insisted, a bit irritated, but thankful feces were not smeared across my carpeted steps; but my friend, the son’s mother, she insisted it was shit. And that was that. The last words spoken: Shit.

I think my angels are telling me something. It’s actually quite clear. Where I am at right now, currently, feels like shit, looks like shit, and even, quite frankly, when I first wake up, tastes like shit; but a part of me, the analytical and hope-filled part, she knows it is just all mud, and like all mud, this too will be swept up in the rain, cleansed and removed.

This is all coming about, this feeling of “shit” because of my hormones and that “time of the month,” aka
“Hell.”

I have gained weight. The weight gain could be the result of the reduction of thyroid pill, or my binge eating from PMS, or reduced walking…… or just the cold winter season. Regardless, bodily changes freak me out. Really do, to the point I don’t want to wear nice clothes and I don’t want to leave the house.

Unless of course I deem the changes positive.

And it makes no difference how often someone reassures me I am still pretty or enough, or beautiful on the inside. It just doesn’t. I get comfortable when I weigh less. Not super skinny, just enough skinny so the fat doesn’t disgust me.

Now, other people, like my friends, if they gain a little weight, I don’t care! It’s so unfair. I really don’t care if they are ten pounds heavier or one hundred, as long as they are healthy and happy. They are lovely no matter what. (sidebar: In all honesty, I have to say with boyfriends in the past and in considering my husband’s weight gain or weight loss, I can be bothered, because I see that person daily and….clearing throat….naked.) And I mean that. Some people even look better with a little more weight. Especially as the female face ages and grows more gaunt. But for me I have a double-standard. I must be a certain weight or I am deemed “not enough.”

Truth be told, last I prayed, I wished to go head-to-head with my bodily issues and with my hang ups on appearance. To face the demons. So here it is! The shit, at least appearance of shit, being dug up and hitting not only the fan, but the stairs leading to advancement and a higher place…hmmmmmm Tricky angels I have.

I must be careful what I pray for. I must. I must!.

When I gain weight, I wig. I spazzzzz. I obsess. My “fatness” becomes my fixation.

For me, it feels like my weight is one of the few things in this world I can find familiarity in; something that doesn’t shift and vary with each ticking second.

I hate being me right now.. I would pay someone to take me ahead five years, preferably un-aged, to menopause. Don’t age my children though; I don’t want to miss out. I just can’t stand these spikes in emotions.

I blame some of this on the changes of hormones since I stopped the natural pig hormone for thyroid issues. The pig hormone, I concluded after much research, was causing peaks of progesterone and then rapid drops which lead to the muscles in my tongue responding while I slept, which led to waking up with sore throats, which led to a head cold every month for two days before my period. And cystic acne (which I never had before) caused by the imbalance of other hormones.

Even though I quoted 50 other people whom had cited cystic acne after starting thyroid meds, my natural path didn’t believe me; however, my gynecologist did. And I have been doing this ping-pong battle of rights and wrongs in my head for seven weeks. “Stop the thyroid pill for six months, and then get retested” ……words served by gynecologist. “Cut the pill in half”… words served by natural path doctor.
I stopped. All symptoms seized. Weight came on quicker.

Well I have grown not to trust my natural path doctor. Even though I adore her and have trusted her for the last two years.

She had me at thyroid levels well enough left alone and then upped the dose in August to decrease my levels more. And as a result I was in a state of hyper-thyroid behavior for months, e.g., hair falling out, heart beating fast, rapid thoughts, increased OCD and need to process, and not gaining weight, no matter what I ate.

Now, my body is confused, as I’ve stopped, or not so much confused, but readjusting, and the equilibrium they are finding is not to my liking. I hate feeling tightness around my waist. And I hate disliking my image, an image I already was uncomfortable with, but slowly getting used to before I began to change…again.

I do not like the uncertainty of the world. I can’t deal with it at times. I can’t deal with anything right now: no noise, no decisions, no nothing; and this is likely why I have been housebound for three days, entirely on the couch or at my dining room table, fixated on organizing my blog and talking to others, fixating on escaping who I am.

I don’t get it, and I don’t get me; and I don’t like how hormones happenings can change ME. I dislike health issues; they are my major tipping point, my trigger, a fear-based swampland. I don’t do well with anything related to sickness. But even in the fowl, muddy-mood I am in, I do recognize my fear of health issues has in the last two months decreased ten-fold…a miracle in itself.

Which leads me to my angels. I can feel them still, sitting back and watching me go through this mucky mud. I know they are there. I know this is necessary for whatever reason. But it doesn’t stop me from wanting to turn them into visible, little fairies that I can stomp on for pleasure.

They get that. They do. And I think I can hear them laughing at the joke, and even giggling in relief they don’t have to be human. But I do. And it sucks. It stinks like shit even though I know it “ain’t.” And that’s the hell of it: Knowing it’s passing mud, but feeling and believing it’s shit that sticks.

I don’t know what to do except to write it out, to pound it out, and hope that someone out there is touched and healed, or at least relieved in some way. Perhaps in the knowing that as hard as I try, as much as I do, as strong as my faith is, that sometimes through it all, all I see is shit.

350: Crap! I have this. That’s all she wrote.

Crap! I have this (too). That’s all she wrote.

PMDD

http://en.wikipedia.org/wiki/Premenstrual_dysphoric_disorder

http://www.mayoclinic.com/health/pmdd/AN01372

Here is a fellow blogger with Aspergers who writes about PMDD. http://worldwecreate.blogspot.ca/2013/03/how-to-deal-with-pmdd-part-2.html

And after lots of processing…she wrote a bit more!
Okay…. are studies being done about this COMT enzyme??? It affects emotions and executive functioning?? AND is thought to be possible cause of PMDD!!!

http://en.wikipedia.org/wiki/Catechol-O-methyl_transferase

Could not feasibly the symptoms of PMDD be used as an additional indicator of Aspergers in Women, since there is the strong connection with the variant enzyme of COMT in people with autism? Yes, indeed, I believe so. I love my brain.

348: I Still Have Those Days

Photo on 3-23-13 at 9.57 PM #2

Today I did the equivalent of stacking toy blocks or lining up cars. I spent a good three hours going through thirty posts on my blog, reading, summarizing, and reposting in uniform formation. I had to. There was no choice. I was on the couch, seated with my laptop until three pm, and that was most of my day. It didn’t matter that there were blue skies out, or that it was a Saturday full of possibilities. I knew I needed to retreat, if not by choice, then by necessity.

For despite my strong faith in God, my strong faith in self, and in my life and calling, I still have those days. Heck, I have those moments throughout each and everyday, where I just don’t think I can make it through. I don’t think about ending my life; I am nowhere near those thoughts. But I do imagine what life would be like if I was someone else, how that simplicity would feel.

There are times I savor the thought of simplicity. I recognize no one’s life is easy, but I too know that there are people who don’t worry from the moment they wake up if today they will be able to leave the house, if today they will be able to face the person in the mirror and recognize who they see, if today will be a day dominated by fatigue and pain.

Today I couldn’t stand myself; not in a large degree, actually not even in a small degree. And I guess it wasn’t really that I couldn’t stand myself, it was more so that I was weary and oh so tired of battling with my self. I just needed to stop, to turn off all of the decision-making, the have to’s, the when’s and where’s. I just needed reprieve.

I felt foolish at times, a mommy and wife, physically functional for the most part, but entirely incapable of doing anything but stacking her imaginary bricks, soothing herself through repetition, words, and numbers. Again and again.

When the stacking was through I wrote; I wrote to friends and then I wrote the previous post, because I needed relief. I wrote what I saw in images and heard in sounds, and I scribed until much of the angst was out of me. I realize I might be the only one that understands the prose, and I reasoned with myself that was okay, completely okay.

And I searched for the word okay further, to apply the word to myself like some special-ordered salve. I am okay. I am okay. I am okay. I kept repeating those three words to myself in scattered whispers.

I was so absorbed in not leaving the couch, I forgot to drink water and I forgot to eat. I just couldn’t move from the couch.

I don’t know why it is I was made the way I am, and why my life is the way it is. I know living can be hard. I know this. But somehow I keep going and keep trying. I keep looking at the woman in the mirror and saying bless you, if not in thought, then from a distant land, a place in the future, where I am aged and have lived long and well. A place where I am proud of where I have traveled and what I have accomplished.

Eventually I got up, showered, and went out with the family. I won’t say there weren’t moments I wasn’t crying in bed not wanting to leave. Because I did dread leaving. I listened to my thoughts, became the observer. I knew what was going on. They were familiar messages: “You are too ugly to leave the house. No one loves you. You are worthless. You are not enough.”

And I battled more and more and more. But in the end I rose. I bid the woman in the mirror hello, I woman I did not recognize or want. And despite the nagging voices, I wiped away my sadness and I tried. I tried to be this someone I am supposed to be.

Most days aren’t this hard, not this filled with doubt and struggle. I know part of my experience is hormonal. I know I will snap out of my melancholy when my chronic physical pains subsides some. And I know my brain is still processing a busy week past.

I didn’t want to forget this day though or leave this day out. Because in many ways these are the days that make me stronger, these are the days I look back upon and think I made it. I made it through again. I made it through to another day.

309: My Wounded One

My wounded one
I see you
I see you there crying alone
I see you with your hands pressed against your fragile skin
Your endless wonderment less chariot than dungeon
Your blizzard mind a target for jagged daggers
Though you are fearful and doubled-down with fear
Though you are strangled, the agony rising and choking dragon from within
I see you
I see you there crying alone
I see you with your heart set out for all, freshly pierced and bleed out upon your sleeve
Your efforts ignored, your desires stifled, your wishes buried with the agony and trembles
Your dreams trampled, your journey unknown, the light dimming and dimming
Though the isolation suffocates and pulls you further inward
Though the ground sinks beneath trapping you in what can only be hell
I see you
I see you there crying alone
I see you, the streaks of your past spread across the room and painted black on each wall
Your moment passed, your joy forgotten, your answers diminished, a sunrise never set
Your sense of isolation churning and twisting, your path unknown in its familiar confusion
Though the images of the future be blurred and joy feels beyond reach
Though the exhaustion breathes alive and misery claims you as chained-companion
I see you
I see you there crying alone
I see you, your swollen eyes, your swollen love, your swollen wants and needs
Your sadness pouring and pounding out in waves, your veins split open and pouring hurt
Your flesh a painful reminder of who you are and who you are not
Though you are crushed and beaten, bombarded by questions and uncertainty
Though abandonment seems certain and slumber your necessary avenue of escape
I see you
I see you there crying alone
I see you my sibling of this strange land, captive to the unknown hauntings
Your strength burdened with heaviness, your view one of bleakness and doom
Your begging a desperation born into being, your emptiness still empty
Though you be an injurious child, nailed to what appears to be destiny
Though you be a fallen star, burned out and spread upon the masses as aged ash
I see you
I see you there crying alone
I see you my precious earth traveler, your shoes worn, your feet bruised
Your image I hold, as I hold the most cherished of nature’s treasures
Your journey I behold, as I behold the purifying waters of a revisited well
Though we be apart, I recognize you as my equal warrior
Though we be separate, I recognize you as my equal healer
For I see you
I see you there crying alone
I see you there calling out in the whispers of your silent ache
Your beauty penetrating the deepest portion of my own existence
Your strength fueling the carved out substance of life that has surrendered
Though you feel blinded, your gift of being grants me the capacity to carry on
Though you feel unworthy, your gift of being grants me the capacity to see my light
I see you
I see you there crying alone
Your heart as my heart, your soul as my soul
Your pain as my pain, your fear as my fear
Though we be temporarily burned within the flame of all consuming mystery
Though we be masked in a disguise of imprisoned misery
I see you
I see you there crying alone

~ Samantha Craft, January 2013

Repost From Day 20. My vision of the Wounded Healer.

The Wounded Healer

“There are many types of healers. They are all brave. No healer is better or lesser than the other. One healer is called The Wounded Healer. Sometimes this may be preferred to as The Wounded Warrior, as they are like warriors, in their undying effort to overcome obstacles and serve. Before coming to this earth Wounded Healers make a soul-contract to answer the calling of a healer. Those that answer the call follow a similar pattern in life; some eventually become healers of great magnitude through various means, others partially complete the process; and still some, as hard as they try to answer the call on this plane, cannot. Still the soul-commitment of a Wounded Healer alone adds to the positive vibration of the earth and heals. And in this way there is always success. A Wounded Healer need do nothing on this planet and still contribute to the healing effect. However, The Wounded Healer that does go on to complete his task will have a huge impact on others’ pain.

Human pain is perceived as physical, emotional, spiritual, mental, and psychological in combination. No pain experienced is singular. Because no pain is singular, Wounded Healers “learn” to understand various levels of pain in their own life. To a great degree, each person on earth has the potential to be a healer. In fact each person in recognizing the light in another human being automatically heals. Thoughts heal. Words heal. But The Wounded Healer varies from many others in that their life’s purpose from birth is to heal. Because of this, there will be distinct markers of a Wounded Healer.

At all times it is beneficial to remember that a Wounded Healer is no greater or lesser than anyone on this plane of existence, and seeing oneself as a Wounded Healer is not meant to elevate or lift a person. In truth a Wounded Healer will feel a great degree of conflict in reading this; not wanting to feel prideful, pleased, or increased in any measure, there will be discomfort in the physical body upon reading these words. For The Wounded Healer’s main objective, above all, is to remain humble in spirit. Without humility, the healing efforts are lessened, not decreased entirely, but depleted with feelings of judgment of self and others. One cannot judge oneself lesser or greater than another, without losing humility. One cannot heal to the greatest degree without humility. Thus, these variants are dependent upon one another; that is to say, give up self to become humble, become humble to heal. Of course, as humans, there is a degree of self-giving and self-worth that is necessary to survive. Therefore, a balance is necessary—that is to say, for The Wounded Healer there needs to be a balance of healing of others and self-love. Though most Wounded Healers, when reaching the fruit of their calling, will be naturally loved and healed through healing others in humility. And therefore, in its greatest capacity, the healing is contradictory in terms of existing as both self-serving and endowed with humility. This is a complicated matter in considering, but no less necessary to explain.

There are five distinct traits of a Wounded Healer. These traits can be used to identify a healer in yourself or others.

(1) Wounded Healers are set on a path of empathy from birth. This is referred to as the “pain-cycle.” Often over-sensitive and naïve in nature, The Wounded Healer will experience pain in all forms before reaching their final role as a Healer of Mankind. This pain will happen throughout many years of their youth, and likely into young adulthood. Some will experience strong degrees of pain for half or more of their life. When this pain-cycle is complete, differs for each healer. When they have experienced the pain intended to experience, the cycle will make a dramatic shift. This will be an obvious shift. Observers will recognize this shift, as will the individual. The shifting of the pain-cycle will feel like a rebirth. This is often predicated by a dramatic change in lifestyle or life choice. This is not to be confused of “hitting bottom” or breaking the cycle of addiction. This is the end result of years of trials and tribulations—one after the other of soul-experience of pain and human-experience of pain, until at last there is a sunrise of a new day. This will literally feel like a “dawning.” There will be no doubt that the pain-cycle has come to an end. Healers will thus still experience pain, pain does not disappear, but the cycle of learning through pain will have ceased to spin.

(2) Often, almost all of the time, the child will experience great trauma in childhood. This will be perceived at one pain-level at minimum, most commonly the psychological-level, but very often the pain comes in combination. Wounded healers choose to experience a childhood of trauma in order to obtain a higher degree of empathy. This trauma (during this current time period) can be seen in all forms of abuse, ridicule, shame, addiction, neglect, malnourishment, poverty and abandonment. In the absence of an outside force produced by others, or in combination, the pain may be self-inflicted, as in perceived ailments of the mind or body. This may take the form of disfigurement, or the inability to be considered by others as “normal.” In later life this pain-cycle may manifest itself in the form of repeated unexplained sickness. These traumas will make a mark on the child. Each mark will serve as a greater good in the years that follow. Each mark indicates a pain that will be released from another being other than the healer. This can be visualized as slashes on the skin. A Wounded Healer carries these slashes that have turned to scars. Each person they heal at a later date will cause a healer’s scar to heal. Thus it follows the more scars a child experiences, the mores pains she is destined to remove from others. But remember, the number of scars is not equated to the number of people. In the process of healing only one person, all of the healer’s scars can vanish. In this way, a Wounded Healer’s soul-purpose may be to heal only one. Whether one or millions are healed is of no difference. Healing one has as much power and magnitude as healing millions. There is no lesser or greater; this is of up most importance to remember. Therefore, a Wounded Healer may complete his contract by healing one or healing many.

(3) All Wounded Healers are called to serve since childhood. It is not uncommon for the child to know before the age of ten what they aspire to be. Whether this vocation transforms rapidly or slowly is dependent upon the pain-cycle the person is to experience. Some will arrive at the vocation at a young age, while other will change jobs many times before answering the call. Still others will slowly transition. All life experience will benefit the Healer’s vocation. In childhood, The Wounded Healer will seek out ways to help others. Oversensitive, they will feel drawn to saving, nursing, rescuing, and easing discomfort. They will notice the wonders of nature that others often overlook. They will cry if a creature is hurt. They will cry if a person is hurt. At one point, in an attempt to survive, they will learn to stop crying as much, and this can cause much inner turmoil. These children will seem wise beyond their years. They will have the strong need to serve the greater good. They will often feel like failures and not good enough. This will be mistaken for low self- esteem. This is not so. These souls have a strong, if not all encompassing need to serve and heal, and when they cannot do so they feel suffocated, inadequate, weak, and not good enough. They might be mistaken by others as depressed, failures, dreamers, or perfectionists. Emotions may be out of control.

4) All wounded healers are empathic and also considered Empathic Healers. The Empathic Healers carry empathic traits, but do not necessarily carry all the traits of a Wounded Healer. The Wounded Healer includes the qualities of an Empathic Healer. However, an Empathic Healer may or may not have the traits of the Wounded Healer, such as: traumatic childhood and pain-cycle. In distinguishing the two, there is no urgency or necessity. But for clarity we point out the difference. Traits of an Empathic Healer include the ability to read the emotional energy field outside of a person. This can or cannot be seen. Usually the energy is felt more than seen. But seeing can be developed with focused practice and attention. Empathics have the ability to pick up on others’ emotional state. They may feel “depleted” in energy around other people, especially in crowds. This is a falsehood to consider the experience a “depletion.” This interpretation implies that there is not enough energy left in the person, and that something has been removed, taken, leaked, or escaped. There is no depletion of energy that is possible. What is happening is the person is taking the others’ energy and reworking the energy so to say, and then returning the energy cleansed to the others. This is like a doctor removing a sample of blood, cleaning the blood, and returning the blood. Only the Empathic Healer is the doctor, the tube holding the blood, and the source of healing. Thus the Empathic Healer is left feeling tired from the process. There is no danger in this except the feeling of exhaustion and the possible susceptibility to taking on another’s pain instead of cleansing the pain. Each Empathic Healer will have to learn how to protect themselves from exhaustion and the transfer of pain. The key is to recognize ultimately there is no pain, and thus, what is really happening is an energy transfer, a giving of one to heal another at a soul-level. This “healing” is complicated, but it is suffice to say the one must recognize the other for the earth to heal, although, even this is very much not the true and ultimate meaning.

5) All wounded healers are repeatedly humbled. This begins in childhood and does not stop for the course of a lifetime. For in order to heal to the greatest degree, as mentioned before, the person must practice and live in humility. Each will do so in various degrees. The greatest healers and shifters of mankind will be the most humble. We need not look far to see who these souls were that existed to transform this world. Not all souls who are Wounded Healers will retreat to the greatest of humility, there will be varying degrees based on culture and the necessity to affect change. How others perceive the healer is still important. Societal rules and regulations, and the status of a person, can all affect the perceived skill of the healer. Therefore, each Healer will have different degrees of humility. Not all seekers will feel comfortable with a half naked man with no teeth. Therefore, Healers are colored in all patterns, and dressed in robes that will attract those needed to fulfill their highest good. This may mean no robe, a tattered robe, a designer robe, or a robe of gold; what matters is not the robe the healer wears but what he houses beneath. A Wounded Healer will heal. This is a matter of practicality. There is no way she cannot.

Wounded since childhood, and sometimes before entering this plane, the soul of The Wounded Healer will seek out help from an early age. They will attempt to remove the pain in many methods. Many of the methods will lead to further humility. Sources such as strict religion, addictive relationships, drugs, alcohol, gambling, overwork, and the like will often accompany the Wounded Healer in his journey through the pain-cycle. Many will seek help through doctors, psychics, energy-healers, therapists, clergy, and counselors, and in this way continue to be humbled. Others may succumb to mental collapse or physical breakdown. Again, they will be stripped to the bare bone. Some will experience great pain through loss and affliction repeatedly, which end results leads to humility. The pain-cycle will continue. When the fruitful time has arrived, The Wounded Healer will break free from the pain-cycle. This is different for each person. If one were to know when the pain would end, this would be no different then knowing the age of death. On knowing the age of death all life is unavoidably lived and experienced differently. Therefore The Wounded Healer has made an agreement to not know when the pain-cycle will end, in order not to affect change or the end result.

Even as the pain-cycle ends, pain remains to a degree. Humility remains, as does the ability to see in others what is in thy own self. Humility then becomes a coat of armor and a friend. A blessed companion we thank the heavens for creating. For in this grand humility we find the comfort of knowing what has come before has served to heal.

In evaluating a Wounded Healer it is best not to use logic but instead to rely on instinct and feeling. A healer of such magnitude, who carries the armor of humility and the pain of many scars, will be notable to you on many levels. First, and foremost, they will carry with them a peace and inner light so that you will have a tendency to feel that you “know” the person or want to know them. You will be attracted to The Wounded Healer and not necessarily know why. This of course is after the completion of the pain-cycle—before this you might actually be propelled away or want to escape. But we speak of the end of the pain-cycle, when the cloak of humility, grace and service is evident. In this time seek you signs of a welcomed presence. This Healer will seem wise beyond his years, will gravitate towards serving others for the sake of healing alone, and will often be serious-minded and unable to easily let go and relax. Overall, in considering The Wounded Healer it is important to remember their coat of humility. For whatever they may say or do, or seem to say or do through your perception, their ultimate goal is healing.” ~ Sam

(No editing was applied to this prose. This all came out in one quick sitting.)

If you be a wounded healer, I recognize you, I see you, I hear you weeping, and I love you. Wishing you love and light and the strength to carry on. With deep compassion and love. ~ Sam

300: Aspergers: The Stuff That Ain’t Working

1. Exposure Therapy:

For years and years I thought if I just socialized more, if I just connected more, and tried harder to be like everyone else, my endurance level for social gatherings would improve and my anxiety levels would decrease. I believed that through repeated exposure that things would get better. That hasn’t happened.

I don’t have a fear and/or phobia to any one thing or event; therefore there is nothing I can focus on overcoming or having less fear about. My anxiety isn’t caused by anything I can pinpoint. My anxiety is caused by the way I process the stimuli in my environment and the way I respond to my surroundings. I am hyper-aware and my senses are turned up to the highest degree. I am also, despite self-training and studies, unsure of how to act in a social gathering, (e.g, how much to share, when to share, when to stop, when to respond, how to stand, how to look, when to be less honest, etc.); and as a result of my uncertainty, I have a constant inner voice reminding me of how to be. A voice that also self-corrects continually.

I need and long for structure and routine. My fear can be reduced if the same events happen in a similar way. However, inevitably changes occur. To say I will get better with practice or exposure is not an accurate statement. First of all, I am not wrong or in need of improvement. I am uniquely wired. One would not tell a person with a visual impairment that if she kept staring at a picture on the wall the image would become clearer, and one would not tell a person with a hearing impairment to repeatedly listen to a song on high-volume to improve his or her hearing. In the same line of thinking, one cannot tell me to continue going outside of my comfort-zone, to eventually gain a sense of security. I do not have the physical capacity. This is not biologically possible for me.

2. Positive Self-Talk/Cognitive Therapy:

While Aspergers can, and often does, have the comorbid conditions of generalized anxiety disorder, OCD, and depression, Aspergers is not the sum of its parts. A person cannot be treated for the comorbid conditions and then grow out of Aspergers. If anyone says they outgrew Aspergers or cured themselves, I don’t believe they had ASD to begin with. Unless they’ve feasibly learned how to reprogram their brain.

I do not think there is a way to change my brain. And as hard as my life can be at times, I don’t like the idea of my brain changing. Aspergers is not a mental illness. The “disorder” of Aspergers is believed to occur in the frontal lobe of the brain. Why and how the condition develops is still largely unknown. Though there seems to be a large genetic factor.

While positive self-talk has many benefits and can decrease episodes of anxiety and depression, and perhaps even diminish some OCD tendencies, it does little to help with the condition of Aspergers itself. No matter how much self-talk I give myself, I still respond in a fight or flight response pattern, when I am in a public place or at a public gathering. I do not want to feel this way, and do not choose to feel this way, but this is the way I feel.

Self-talk and cognitive behavior techniques can sometimes do me more harm than good. When I am panicking, no matter how many times I incorporate positive self-talk or implement cognitive behavioral techniques, (e.g., replace negative belief that is a falsehood with a true reality-based belief), my body continues to respond as if I am in danger. When I do in fact implement the self-talk, in an attempt to do the “right” thing or to “fix” myself, I then feel guilty when the technique does not work. I then question why I was not capable of applying such a simple concept to my own way of thinking.

No amount of practice, hard work, or scouring through books has increased the effectiveness of cognitive-based therapy techniques for me. And the more I use them, and fail, the more I feel as if I am wired in a way that is wrong.

What does help me is letting go and realizing that the panic is something I have to go through, and realizing that when I am on the other side I will be okay. And that there is nothing wrong with what I am doing or going through. It is just the way I am. So in a way I am using positive talk, but not in the traditional sense. I am not finding a false statement or belief that needs change and fixing it. Instead I am self-soothing and reminding myself I will be okay regardless of how I feel at the moment.

I use my thoughts as more of a security blanket. The best thing for me to do in times of anxiety is not to retrain my brain to talk better to me, but to retrain me to treat my brain better. The key being letting go and acceptance.

3. Thinking if I am more self-aware I will be able to control my thoughts and/or anxiety:

I can’t control myself sometimes. I thought if I read enough and studied enough that I could reprogram who I am at a core level. To a degree, spiritually and perhaps energetically, and maybe even genetically, I might be able to alter myself, depending on what doctrine I deem to hold some semblance of truth, but overall I cannot change this elemental core of Aspergers; and if I feasibly can, the answer repeatedly stealthily eludes me.

I have tried every way imaginable to knock some sense into me when I go into a mode of shutdown, and there is nothing I can do, beyond pushing through the uncomfortable emotions.

When my anxiety is high, I become immobile. I cannot do simple tasks. I become extremely fatigued and unable to think in a linear fashion. I become trapped in a cycle or loop of thought. I can step back and see myself doing this. And the odd part is, I know what tools to implement that should supposedly pull myself out, but I also know they won’t work on me. I have tried. Nothing works to stop the anxiety when it is in full swing. It is like I have to go through the tunnel of darkness to come out cleansed and regenerated at the other end.

Days filled with too much sensory overload lead to days of shutdown. During this time life seems bleak and not worth living; however, it does not feel hopeless. I feel fed up more than anything, and exhausted by thought and life. My good hours are usually from when I wake up until mid-day. By mid-afternoon, I often become overwhelmed. This is when I can do little more than sit on the couch. I cannot listen to someone talk for long. It is like I am a computer and all my memory has been filled up. There is no more room left for input.

I have thought to scribe a list to remind myself during the high-anxiety, shut down times of what I need to do to feel better. However, when I am in shutdown, I know that no list of any sort will help. It doesn’t matter that I know why I am overwhelmed and exhausted. My brain is in lockdown. I am protecting myself from short circuiting. The last thing I need is logic or steps to follow. This cognitive reasoning only leads me into further shutdown and retreat, further bombarded by the outside. The only method that works for me is releasing control and letting myself go through the emotional process. If I do not let myself retreat, I will likely have a meltdown, in where I shout and cry. I need time to decompress and be alone. Time to process and discard of my abundance of emotions and thoughts.

4. Thinking that by knowing I have Aspergers I will be more likely able to change myself.:

With self-recognition of Aspergers my behaviors have shifted, but I haven’t changed. Before I didn’t understand my emotions. Before a major event, like a party at our house, when I didn’t know I had Aspergers, I would get extremely controlling and high-strung. I would order my husband around and start arguments. I would create chaos so I could release the tremendous fear building up inside of me. I didn’t know the fear was from thoughts of the upcoming events. My husband would often ask me why I was so angry and touchy before a party. I didn’t know. I thought I was a controlling person and needed everything to go my way to be happy. The problem was I knew innately I didn’t want to be a controlling person and I was never happy, regardless.

It wasn’t until I realized I had Aspergers that my behavior changed. Now, before an event, I no longer subconsciously create drama so I can release emotion. I didn’t consciously decide to change this; the change happened naturally with the discovery of my Aspergers. Now, I am hyper-aware of why I am upset. I recognize my emotions in detail and the triggers that set me into a state of anxiety. It might seem that knowing myself more would make the anxiety level decrease, but actually the anxiety is more intensified, because I am no longer subconsciously utilizing displacement. I am not displacing my own dread about an event into another event. I am not using or finding a scapegoat. I am not creating drama in order to diffuse my own tension. Instead tension keeps building and I have no way to release it.

Now that I am more aware of my own behavior and emotions, and the triggers, I do much more stimming, e.g., I flick my nails, flap my hands, clear my throat, click my teeth, and so forth. I also have anxiety dreams related to a planned event. And the day of the event, I have extreme fluctuations of emotions, and sometimes physical symptoms such as hives and/or stomach aches. I am now taking in the full of the experience and my body is responding. I don’t know if this is better or worse than the displacement. What is also happening is instead of “freaking out” before an event, I am often “freaking out” after the event. I feel very much like a child who holds herself together for the better part of the day, only to go home and have a meltdown.

I have found, to date, the best way to handle my anxiety is to not turn it into the enemy, or something to be eradicated and ejected, but something to be accepted. The more I fight the anxiety, the worse I feel, for there isn’t any avenue that saves me or leads to rescue. I have to go through the discomfort in order to feel relief. The process is similar to a minor panic attack or adrenaline rush, but it passes, and the more accepting I am of the process the quicker it passes. I’ve noticed the same with my dog’s epileptic seizures. They used to last up to twenty-minutes; now when they begin I hold her and release my own fear. I accept she will go through the seizure and be okay. I send this feeling of acceptance to her, and do not fight her seizures. I then let her go, or hold her less closely, and ignore her in a compassionate way, as if telling her: This is not a big deal. Don’t give it power, and it will pass. Since incorporating this method, my dog’s seizures have decreased drastically in length, generally only five minutes, and sometimes less than a minute. My own anxiety is like a my dog’s seizure; if I just let go and trust it will be okay, it passes much quicker.

5. Believing that by making plans I will feel more structured and therefore I will experience less anxiety:

Sometimes lists help me; especially if there are no deadlines on the list. I like to make lists of chores or errands, and to cross out items as they are accomplished. I also like to rewrite new lists and to see how much the to-do items have diminished. Lists are my friends. Appointments on the calendar are not my friends.

I remember my father would always tell me a similar thing. I would ask him if we could get together on such-and-such day, and he would typically respond that he couldn’t tell me yet, and that deciding at that moment didn’t feel comfortable to him. He did better with last-minute plans. I didn’t understand at the time why my father acted this way. I felt cheated out of his life and not important enough to plan for. But today I understand my father more. He didn’t want to make plans because he didn’t want the stress of worrying about an upcoming event. I am the same way. I have been my whole life.

To me, the best days are days nothing is on the calendar. Even one appointment or obligation can make me anxious for hours beforehand, sometimes even days beforehand. The thought of having to pick up my son up from school each afternoon causes me stress. I leave at a set time daily, and the trip is short, easy, and non-eventful, but the stress does not dissipate.

Usually two hours before a scheduled event, I start to become very preoccupied with the time and the steps I will have to take to leave the house. Simple tasks, like showering or getting dressed, feel overwhelming. I can spend several minutes, processing and reprocessing the pros and cons of showering. I can create in my mind a half-dozen scenarios of what sequence I should follow in preparation for my departure. Even before I’ve started the process of getting ready, I am often mentally exhausted.

When I see an event on the calendar, I have a small panicky feeling inside, as I realize that soon in preparation for an event, I will experience something similar to post-traumatic-stress-syndrome.

This seems contradictory in nature to me: the fact that I do well knowing what to expect and with routine but at the same time I dread plans on the calendar. I look forward to well-structured days indoors at home. However, the repeated isolation and lack of adult company can lead to depression and feelings of isolation, loneliness, and inadequacy.

There is a continual pendulum of want inside of me. On one side there is the longing for company and stimulation outside the home, on the other side there is the longing to hibernate and not have to experience the anxiety involved in going out. This pendulum moves back and forth. If I am not careful, I can self-punish myself by wishing I was different and more normal. I am in a constant state of fluctuation, never centered, and always wanting.

6. Believing if I can just let go of Aspergers and get on with my life, I’ll be fine.

I joke with myself sometimes. I think if I write enough and share enough, I will process the Aspergers right out of me. Some silly part of me believes I’ll wake up and be cured of Aspergers, and if not cured, so much better able to function. The truth is I don’t need to be cured. I am not sick, or ill, or broken. I have been born with a brain that is different from the general population. If society was different, I would be responding differently. But society isn’t different.

I have tried over and over to change myself, to try to fit in, and to try to function, but the more I try, the more I find myself battling the same resistance. What I have found that works is contact with other people who understand me. I feel safe with most people with Aspergers, and to a degree safe with people who would classify themselves as a bit “quirky” or “shy.” I fit nicely with the odd balls and misfits.

I don’t need to let go of Aspergers, I need to let go of isolation and thinking there is something wrong with me to begin with. The more lovely souls I meet with brains wired like mine, the more I learn to appreciate my uniqueness and beauty, and the more I recognize the depth of my own intelligence and empathy.

I was created differently, but different is not wrong, and need not be terrible. With the right balance of release and acceptance, and with the right connection with like-souls, I am learning to navigate myself in this world. Where I used to believe I was dropped down on the wrong planet, I now believe that I am right where I am supposed to be.

Day 203: This is Boring. This is Pain.

This is boring. This is pain.

Somedays, like today, I struggle to function.

Every day is a huge challenge for me; something that I seldom talk about or mention. Just getting out of bed takes a lot of effort. I don’t like to write about my  pain and various physical “conditions,” as I am not my conditions, I am not an illness, and I am definitely not pain. I don’t like to talk about everything I must do to keep myself moving.  But I am. Mainly because I was on the couch all day and had a heck of a lot of time to process. Plus, a little boring never hurt anyone.

There isn’t a moment I don’t feel something askew in my body. Because I am so sensitive, even a hair in my face can irritate me, even cause a rash. My own hair! My nose constantly itches. Sometimes my eyes. All my joints seem to hurt. But I can’t tell if it’s my joints, my muscles, or something else. And neither can the doctors. Right now the couch hurts my bottom. The laptop desk hurts my thighs. And at least ten different areas in my body are either in pain or irritated or itching.

I’ve been diagnosed with at least ten syndromes or illnesses. Nothing is a definite. Nothing truly proven beyond a long list of symptoms. At this point I could have inherited something, suffer as a result of multiple injuries/accidents, been prone to pain from stress or environmental toxins, or made everything up in my head.

Sometimes I like to think everything is in my head. At least I have some control that way. The older I get, the more I realize my whole reality is in my head, anyhow. All my thoughts control my mood. My eyes what I see. My ears what I hear. My brain what I take in, recall, process, judge. I’m sure my spirit plays some part, as well as my second-brain (the intestines), but seriously, so much goes on in my head to begin with.

There are lots of things I have to do in order to function. If I skip any of them, or if something is off, I am pretty much certainly going to be in bed or on the couch for a large period of time. Each day I wake up, I feel like I am preparing for battle: a battle just to survive the day without collapsing in great fatigue and pain.

Here is a list I keep in mind to help manage my days.

1)      Shower; something about the hot water on my body rejuvenates me and reduces my muscle pain. If I don’t shower I feel extra greasy and itchy. If I don’t shower, I feel increased pain all day. Problem is, sometimes I’m too tired or fatigued to even think about showering. I have to force myself to. I don’t like showers. They are boring.

2)      Pig hormone; for my hypothyroid I have to take a natural pig hormone. I haven’t eaten pork since sixth grade (my decision). So at first the thought of ingesting any part of a pig, felt odd, but then I figured it was the pigs way of paying me back. Pig karma, for not eating them for so long. Trouble is this hormone gives me the skin of a fifteen year old. I appreciate the healthy glow, but the sticky oil and chin breakouts, I could do without. Seems I’ll take longer to get all wrinkly, though. So, I guess that’s a bonus, even though my skin is worse than my teenage sons’.

3)      Various supplements; if I go too long without any supplement, I feel it somehow. However, one benefit of being me is that I’m very sensitive to what is happening in my body. In September, it will be two years since I’ve had a cold or flu bug. I can feel a cold coming on. I feel it in every joint in my body, like I’ve been poisoned. Feel it before most people do. And when I do, I load up on Vitamin C and Vitamin D. So far I’ve managed to keep from getting sick. Fingers crossed and knocking on wood. I can tell things about me, too. If my eye sight is growing worse, I need more magnesium. If my leg twitches, I need my multivitamin. If I am tired, I need to take my iron and eat a little fish.

4)      Diet; it’s easier for me to list what I can eat, than what I cannot. I can eat nuts, fish, vegetables, and fruit. Everything else gives me some reaction. Chocolate gives me rashes and makes me break out. Dairy gives me rashes. Wheat makes me bloated and depressed. Artificial anything gives me stomach issues. Most foods in general cause me extreme fatigue immediately after eating. If I am going to eat, I usually have a small portion of salad. Grains are going to make me tired. Wine hurts the salivary glands in my neck. Beer gives me a stomach ache. I am definitely high-maintenance. If I am not careful, after a meal, I will be in pain and fatigued, and have to take a nap.

5)      Liquid; I need to have lots of water and green tea. The green tea gives me the boost to function in the morning and alleviates my chronic fatigue. Green tea also lessens my pain. If I have coffee I go into a spastic mode. If I want to clean I have a quarter cup of coffee in the morning. If I drink coffee I will be up past midnight and have lots of cool ideas, or what seem to be cool ideas, but are really elaborated ramblings that don’t prove much of a point. Coffee makes me paranoid, worried, and stressed. Oh, and agitated.

6)      Exercise and movement; I have to move. Once I sit down, it is very hard for me to get back up. Especially if I combine eating in the morning with sitting on the couch. And forget it if I eat, sit on the couch, and skip my shower—I’m pretty much down for the count on those days. If I walk my serotonin levels increase and my mood is better. Everything is brighter. If I walk far, lately five to seven miles in a day, it is easier for me to sleep deeply at night. Fatigue sets in badly about 3:00 pm, so if I can walk then, sometimes a second walk, I can keep from sliding into the unable-to-move zone.

7)      Weather; if there is a lot of barometric pressure from clouds then I have a hard time moving. Also, if it is chilly, my bones ache. At least it feels like my bones ache. On cloudy days (most days in Washington) I need to make sure I take care of myself; if I do not, I will not function. On cold days the far infrared sauna is helpful. But sometimes I am too fatigued to go into the sauna. The thought of having to undress, shower, and then dress again seems overwhelming. I worry about how I will keep up my walking with the end of summer coming. I have to find ways to exercise. We have an indoor treadmill which I avoid. And a stationary bike I haven’t made friends with, either.

8)      Sleep; if I do not get enough sleep, I will have increased pain and fatigue two days following. If my sleep is interrupted and/or not restful, the next days will be harder for me to move. I am sensitive at night. I need a special mattress for my body to feel comfortable, must wear long sleeves and long pants, regardless of the weather, or I itch, and need to use earplugs. All noises bother me. Particularly banging, high pitched noise, the ticking of clocks, water of a fish tank, voices, television, and snoring.

9)      Stress; if my stress level is medium to high, I will have instant pain. People’s moods affect my pain. Screaming, whining, loud noises, yelling, fighting, and the like increase my pain. Unwelcomed news increases my stress. Lies are a big trigger for me.

10)   Thoughts; if something is out of the ordinary, if plans get changed suddenly, if I notice something on someone’s body that is out of the ordinary, then my thoughts may overwhelm me to the point of exhaustion. My thoughts can trigger sudden onset of pain. When something I am looking forward to is suddenly canceled I am fine. But when something happens I wasn’t expecting, no matter how pleasant, I can get overwhelmed. Skin “issues” are a big trigger for me. I have an odd rash around my eye. I worried and fretted today about my eye, and collapsed on the couch from fatigue. I catastrophize in my mind, thinking of worse case scenarios. My sons have mosquito bites all over them from one hungry house bug we’ve yet to catch. And my chin is breaking out from that pig hormone. All this increases my thoughts.

11)   PMS; oh yes, the lovely word. The five days of hell for me. All my pain increases, fatigue doubles, negative thoughts increase, and basically I think the whole world hates me. My face and stomach swell up and I look and feel like the Pillsbury Dough Boy. This makes it harder for me to leave the house and exercise, which can lead to further fatigue and bring on depression. You’ll notice I do not post photos of me during this time. I also get cravings for chocolate! Not something I should really be eating.

12)   Chemicals; I have to avoid all chemicals in products and makeups. Thus the frizzy hair and minimal makeup. I get instant pain from inhaling chemicals in all forms. I have to avoid places with new carpet, paint, flooring, or other odors. Plastic smells are the worse.

13)   Information; I have to be careful what I read or watch. News or a film can deeply affect my mood, which triggers…you guessed it…my pain. People close to me have learned not to share sad news that doesn’t directly affect me. Some visuals I’ll never be able to get out of my mind.

14)   Noise; certain genres of music physically hurt my body. Dogs barking hurts my ears. Loud cars, especially motorcycles hurt. Too many people talking all at once, large gatherings with lots of conversations at the same time, all cause me trouble. Noise can affect me for the entire day, and may mean I have to stay inside the next day to recuperate.

15)   People; people affect me in all sorts of ways: their mood, their appearance, their smell, their mannerisms, voice, attitude, energy-level, facial expressions, spoken words. If my feelings get hurt, which happens more times than I’d care to ever admit, then I typically will feel pain somewhere in my body. If a person is sick, I might get phantom symptoms, even if I don’t know they are sick. If a person is happy or sad, I might start to feel that same way.

16)   Dread; if I am dreading something, particularly medical news, doctor appointments, or an upcoming outing, I will have trouble concentrating and relaxing. I will loop in my mind and spin in my thoughts. This will cause tension in my body, which leads to other problems. I have to get blood tests done about every six months to check my vitamin, protein, iron, and hormone levels. The thought of annual or biannual appointments for anything, sets me into a mini-panic.

So that’s my boring list.

This is boring.

This is pain.

Great movie Sliding Doors to watch when you are stuck on a couch!

And dang if that mosquito didn’t just buzz in my ear!!!