comorbid conditons

Day 163: Super Freak

| Aspergers Girls

I’m a SUPER FREAK this morning. I am pretty sure my youngest has restless leg syndrome. And he definitely talks, moans, and moves a whole lot in his sleep. Oh, yes…..traveling once again, and so very much reminded of my human condition. This time an eleven hour drive to California with my three boys, ages ten, thirteen, and fourteen…..oh boy! Literally!

Just pulled this writing up from early May 2012. Today, again, having slept in a hotel (sigh) I am dealing with much overload, lack of sleep, exhaustion, and grumpiness. Hope to have a happier disposition tomorrow after a decent night’s sleep. If you see a woman having a meltdown on the side of Highway 5 in California…that would be super freak me!

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On the first day of our trip to the Island of Maui, I was reminded of my over sensitive system. I hadn’t imagined the plane fight would be such an unpleasant experience. I’d forgotten, or more likely, I’d hoped for change.

Many people with Aspergers, if not all, are extremely sensitive. They feel emotions and feelings in great depth. Likewise, their senses of sight, sound, touch, taste, and smell are very acute. Often, a person experiences sensory overload when he or she is outside his everyday environment. In some cases, home or perhaps nature, are the only places that are tolerable to the senses. Outside of the comfort zone, a person with Aspergers can likely feel an overwhelming degree of agitation, pain, and misery. This is one of the reasons I prefer to spend more time at home than in public places. Sensory overload can lead to meltdowns—which are akin to adult tantrums—a screaming out for help, when one does not know how to help one’s self.

In considering sound, where many people can block out background noise and focus without distraction, people with sensory sensitivities hear everything at once. There is no mute button. And there is no making the noise stop, beyond earplugs and escape.

The other senses work the same. Textures irritate. Smells overwhelm and overtake. Sights hurt. And even the taste of air is unpleasant.

It appears there is something about the Asperger’s sensory and processing system that cause people to sense things in the environment in segmented over-exaggerated parts, instead of whole. Instead of looking upon a crowd and seeing a crowd, one looks upon a multitude of bombarding shapes and sizes, each movement as uncomfortable to view as the next.

People with sensory sensitivities are acutely aware of everything happening in their environment and everything seems to be occurring all at once. There isn’t release. What would be a soft unnoticeable hum to one becomes a piercing roar to the other. It is as if someone has turned up the volume of every single sensory organ.

There is no relaxation, only the constant stream of shards—parts of chatter, parts of the ticking clock, parts of the rattling and  hum. There are parts of smells, all sorted out and classified, not mingled, not forgotten. There are parts of tastes—the breath, the air, the fragrances, the poisons chemicals. Sights are in parts. Fragmented pieces that attempt to make a whole, but fail. A face not remembered except as shape of wrinkled wide nose and color of dark narrow eyes. Even the mind is in parts, continually breaking down wholes to subsections. Whole to parts is easy. Parts to whole is hard. Nothing is as it appears. Everything is in parts. It is the parts that bring agony, the endless parts that bring with them the impossibility of finding retreat in the whole.

With my sensory sensitivities, the six-hour ride in the airplane to Maui was torturous. No mind control, mantras, visualization, or distractions could stop the parts. And lacking the ability to help myself, sank me into self-blame. I sat in misery wishing to time travel into sweet oblivion. I became depleted, agitated, and depressed. Meltdown was avoided, but angry eyes prevailed.

The worst was the piercing babies’ cries. There were at least ten babies on the plane. There wasn’t a time when one wasn’t screaming.

I did find refuge. I had my words. I could write. I could escape through the process of creating images, feelings, and thoughts into story. Words were my parachute and freedom, a passport away from the screaming shards.

Cry from the Sky

Imploded

Without retreat

Saturated misery

Roots into ear

Vine out

Crumpling, tearing, crackling paper

The rhythmic off beat dance murdering peace

Stop!

Bring silence

Opening cans, clanging carts, annoying repetitive footsteps

Bumping in front, bumping in back

An uninvited rollercoaster

No escape

The babies scream and scream again

Piercing thorns

Constant chatter, whispers, sighs

Conversations bleed into a monster of noise

Roaring engine rattles fury

Even the yawns scream

Squishing and swishing misshapen bodies

Stench

Stale garbage

One hundred meals at once

Beyond window, the fresh and silence beckons

A tease of the unattainable

Aches, irritations, stiffness, icy cold

Suffocating soreness

More bumping, more banging

Nothing is calm

Nothing is motionless

Everything moving

Everything in parts

One broken into a thousand

Question after question

Comment after comment

Trapped in stinging air

Recycled germs everywhere

Breathing in danger

Stop. Shut up. Cease

Release me

Put a cork in the child’s mouth

Put a muzzle on the man

Put a mute light on

STOP MOVING!

Energy spikes, energy flows, energy feeds

Energy spirals, burrows, pangs

Into self

Close eyes

Close noise

Close people

Close the outside

Focus on inside

Focus on calm

And still the babe screams

“Help me!”

Day 150: The Faded Sun

| Aspergers Girls

The Faded Sun

“Was it your voice or another voice that told you to kill yourself?” the stranger asked.

“My own voice,” I whispered from a mouth I could no longer feel.

I brought myself forward in a chair, a purposeful push, only to prove to myself I could move, that my brain synapses fired.  I nodded solemnly in the direction of a blank white space.  There was a stain in the high corner.  I was unable to focus, unable for the first time to pretend.  I had always been able to follow someone, to take the cue from the people around me.  Here I could not.  Here, though I was clothed, I was stripped naked, paralyzed with the thought that there were no answers…

 

The rest of this story can be found in the book Everyday Aspergers

 

Maui 2012

 

Day 117: A Body of True Confessions

| Aspergers Girls

(This post used to have photos of me. They have been removed by me. Hope you find the post useful.)

This is me HAPPY. This is my real smile caught by camera. I just found out the frozen banana bread ice-cream sandwich was going to be dipped in chocolate! That’s me in a nutshell. Give me chocolate and I forget everything else.

We have returned from Maui. And I am sorting through photos. I HATE  don’t care for photos of me.  I never ever feel like a photo looks like me. I see myself in parts, not in whole. So I see my nose, or the wrinkles around my brow, or the sun spot on my forehead, or the many other “flaws” that jump out at me. I tell myself I should look better. That I need to change. That I’ve aged. And so on….

No picture I have ever taken looks like how I see myself. And in every photo, I look so different (to me).

I get super depressed when I go through vacation photos, because I think I look absolutely terrible. I don’t think it’s a vanity thing. It really is not having a clue what I look like or understanding the image I am looking at. I try to tell myself positive messages, but somehow the messages get all twisted.

And then I get a host of negative messages, such as: “You need to lose fifteen more pounds. Imagine what you looked like before you lost those ten pounds. You are so HEAVY.” I tell myself horrible things, like: “Oh, your husband probably hated to take this photo of you, knowing you are starting to look soooo old.”

I’ve partaken in this negative self-talk, since puberty. Before then, I could care less. I had a huge overbite and a chipped front tooth, and would smile like I was a movie star. Something changed with puberty. Something changed when I realized people judge on appearances.

Thing is, I don’t notice the physical “flaws” in other people. When I look at their photos I see pure beauty. I see their essence. I think all people are beautiful. But I still get so terribly down on myself.

Posting photos of me on this blog is HUGE for me. Of course, I went through and cursed a dozen or so shots, before choosing the ones I felt safe to post.

Often, after a few years pass, I can look back on a photo, and see more of me. I can appreciate the happiness I had during the photo and see less of the flaws. I tell myself: “Why were you so hard on yourself. You’re sweet and kind. And you look absolutely fine!”

I’m hoping, this time, it won’t take a few years. I don’t know why the passing of time helps to view myself, but it does somehow.

I tell myself, I ought to be happy I can take a decent photo with little to no makeup on and my hair barely brushed, if brushed at all. I tell myself that everyone ages, that no one is perfect, that my distinct characteristics make me ME! But the talking doesn’t help. The negative thoughts come back full force. It really is a curse.

I don’t like worrying about how I look to other people. And I certainly don’t like worrying about how I look to me!

I’m putting this out there to help myself. To share my deepest thoughts, and in so doing release some of the associated doubts and deep-seeded fear. Heck! I just returned from one of the BEST VACATIONS in my life. Probably THE BEST, and I’m fretting over how ugly I am, telling myself I ought not go out in the world and be seen in public! It’s very, very ridiculous.

Maybe part of it is not having had a father who ever hugged me, called me pretty, or said he loved me. Could be that my father is so heavily into fitness, always firm and muscular, always concerned about his looks, that when I see me, I feel rather inadequate.

Could be, too, that it’s how my brain works. I know other people with Aspergers that see things in parts and have a hard time seeing the whole. Maybe seeing myself in parts, scrambles my beauty in my head. Sort of like seeing a lovely Black Beauty Horse cut and dissected into pieces on a platter. I think that’s what I do: Dissect and pull apart so that nothing remains but broken slabs of me.

Here is a list of what I feel uncomfortable about me:

1) Since my mid-twenties my arms have been thicker than I’d like, heavy and wide compared to other people my size. I have to be a size 2, seriously, for my arms to appear skinny. My husband says its proportional to my chest and that I have a swimmer’s body; another friend calls me ‘healthy.’ I don’t like either one of those observations, and would much prefer to have skinny arms! Skinny arms fits my personality. I see myself as petite, like a fairy. No fairies have a swimmer’s back.

2) I have incorrect posture. So does my son with Aspergers. It is hard for me to stand fully erect. I look funny, to me, when I stand up tall. I don’t know how to stand without feeling unnatural and in an awkward position. To protect myself from others, I have always hunched. I feel safer hunched. My posture makes me appear odd looking in photos. Same with my hands and arms. I don’t know where to put them in photos. And my smile….I never know what a real smile looks like.

3) My skin used to be perfect. I was very lucky. I looked like those kids in the suntan advertisements. Lots of California sun changed that. Now I’m spotted like a spotted lizard. This spots jump out at me in photos, as does every freckle, marking, mole, and “imperfection.” As I age, day by day, more markings appear. I don’t like to watch my skin change. It bothers me to no end.

4) My Italian nose will forever haunt me. I have tried to love it, truly. And it didn’t seem to get in the way of attracting previous mates; however, my nose is all I see in photos when I first look. That’s why I like far away shots. My nose looks cute if I’m standing back about five blocks!

5) My eyes. I’ve always loved my eyes. But now they appear sunken and old. Like I’m twenty years older than I am. Maybe that’s because I still feel like a teenager inside. But outside someone has redecorated, and I’m not too impressed.

6) My chin. At some angles, I look like I have three, and can’t tell where my neck ends and my face begins. I have a very prominent chin. My son’s orthodontist complimented my bone structure. Maybe if the whole world were orthodontists, I’d be set. I see a witches chin. The witch that has the house fall on her. I want to be the good witch. Luckily I have no warts or hair growing out of moles.

7) Sadness. Sometimes in photos I look very sad or even angry. It’s not how I’m feeling. I don’t feel irritated or melancholy, but I look like someone either just said something to piss me off or just told me my cat died. I try to look like me, and have no clue how to. It’s very frustrating. Sometimes I over smile so people will know I’m happy. Then my husband says: Don’t smile so intensely. Often my eyes bug out, if I’m trying too hard to smile.

8) My hair. It has a life of its own. I never know what to expect. My hair looks the best in the bathroom mirror, and as soon as I step outside the bathroom, my hair changes. I swear it does! Perhaps it is the lighting and the shadows, as my hair appears entirely different in every photo.

9) Shadows and lighting. The lighting of a photo changes how I appear to me. Sometimes I appear swollen or shrunken; other times expanded, elongated, and downright horrific to look at. I want to carry around a perfect lighting bulb above me, like a photographer. I have not posted the photos of me that make me look like I’m a marshmallow, that make my face appear shrunken into itself, and that show I’ve been tattooed with wrinkles. But they exist.

10) Ghastly spider veins. I’ve inherited those creepy little bluish-red lines that decorate my knees and thighs. I think I have as many as most people approaching their eighties. They are truly icky. I press on them and they magically disappear for ten seconds. My husband says that’s not what men are looking at. I don’t really care what men are looking at! I care what I’m looking at. And spider veins are not beautiful. I once read that a lady had lost a lot of function in her legs (mobility) and that she would do anything to have legs that moved well. She said who cared about spider veins. She’d be thankful to have any functioning legs. Reading information like that only makes me feel extremely guilty for not appreciating what I have. Then I just beat myself up more.

To be fair, I do like my eyebrows, my hair color, my teeth, my neck, the bottom half of my legs, and my toes. So that’s a good start, I suppose.

My Biggest Fear……That I will be too ugly to be loved. That’s it! I said it. It haunts me day and night. I feel so beautiful and light-filled inside, but I am afraid the outside will scare people away. It’s silly, I suppose, but it is how I feel. I don’t want to grow old. I don’t want to watch myself change. I don’t like change!!! I want to live a long life, but I want to freeze my appearance. I don’t know how to handle my body shifting. I don’t want to be one of those plastic surgery ladies or Botox queens, but I want to be able to look at a photo and see me.

Wine tasting, and what am I thinking. Oh, I look terrible in this photo. Notice how I chopped my arm out of the photo. Huge stress line on forehead, spotted arm, pointy chin….Gag me. I’m so super self-conscious and critical. If only this were a redeeming quality.

Almost didn’t post this because of my nose wrinkles. I secretly want you to think I’m 20. I had my kids at the age of 6! I’m such a goof-head. Someone change my brain, please!!!

I see big nose, forehead wrinkles, and fat face. This is what I see. I want to see friendship, love, and happiness. But I think: I wonder why my friend likes me when I am ugly. Yes, this is sad, but this is truth.

I love this picture. This is truly me HAPPY. Right before I surfed. My arms are covered so I feel safer. And this is one cool dude!

I like this photo because I’m far enough away that my nose looks cute and you can’t see my wrinkles! Maybe I’ll just stay a distance away from people. Of course, I see my flabby arms and my double chin and my pointy little ear. But my teeth look white!

I’m crying streams of tears. This is beneficial. This is healing. I’ve told my secrets. They shall no longer haunt me!

Day 82: Blister Sister (Part One)

| Aspergers Girls

Blister Sister: Part One

On a Monday just past four in the afternoon, Mother, dressed in her secondhand dress and faux-leather heels, drove a little faster than normal—which was still relatively slow.  I was seated in the front seat of Ben’s battered sedan.  Every few minutes a piercing pain drove up my left side causing me to let out a muffled moan, which gave Mother a reason to pat her hand on my shoulder and offer out a sympathetic smile.

This was an unusual ride, given the fact I was headed for the hospital, and Mother’s live in lover, Ben, who was habitually attached to the front seat, was dutifully sulking in the back.  I was so accustomed to seeing Ben’s broad back hunched over in the front that upon spotting him there, behind me, sprawled out in excess of half the seat with his socked feet propped up on Mother’s weather-beaten briefcase, I swore to myself I was dreaming.  But if I was dreaming I thought, then surely when I had shut my eyes and then peered out again, Ben would have vanished…

This story can be found in the book Everyday Aspergers

 

© Everyday Aspergers, 2012. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. https://aspergersgirls.wordpress.com

Day 80: Me in Parts

| Aspergers Girls

There’s a reason I didn’t go into the medical field besides the fact that I faint if I look at a needle. I don’t do well with illness, disease, or sickness of any sorts, or thoughts of being attacked by a killer species. I do fine with driving my car, walking down dark alleys, crossing bridges, and climbing high places, just can’t deal with physical health conditions—well at least not rationally. The common cold sends me into a tailspin: worse case scenario, worser case scenario, worsest case scenario.

In the course of my four decades plus of living, I was certain of my imminent death at least five times a year. Looming demise total equals 200 times, give or take a death or two. And I’m not talking a passing thought. I’m saying a good two- to three-week sickness-induced death-terror cycle. And with the invention of Google God, the all-knowing search engine, I’ve also had hours of adrenaline-pumped investigative research.

Last year, about this time, I was certain, dead certain, that my heart was going to explode from a genetic disorder. I was so convinced I had the syndrome that I was continually analyzing myself for symptoms, even in my dream state.  In fact, in a comical attempt to self-diagnose, I compared my attached earlobes to others’ attached earlobes and even wondered if my large Italian nose could feasible be considered pinched.

When I was younger, rabies was my big fear. I never ever should have watched the depressing classic Old Yeller in third grade. Why?! Afterwards, my hamster-bit finger led me to check my mouth for foaming saliva hourly, for a month! Watching Hitchcock’s The Birds was another faux pas. Remember the killer bees? Well I do. I believed for years the bees were approaching in swarm.

Bloody noses are notorious fear-buttons, ever since I saw that character on a television show with a bloody nose bleed-out and die.

My fear of the C word started after my kindergarten teacher died; and I still can’t write the word out on paper. Which ironically-sucks because it’s my astrological zodiac sign. Four times during my life, twice as a teenager, and twice as a young mother, doctors suspected I had C or pre-C. No cause for alarm in all four cases, but the panic that ensued during the waiting period was insurmountable.

You know what really bites? Working at a homeless shelter and having a child infected with AIDS bite my leg through my jeans. The doctors assured me my chances of contracting AIDS was almost zero; still they wanted to be certain. I checked my tongue for a white-coat and my skin for sores for a good year.

My most laughable approaching-doom-fear happened when I was nursing my firstborn in the late hours of the night, and I’d stare down at the dirt in the corner of my toenail, and know I was going to die of toe fungus. If you bring in the big guns like MRSA, I so freak out. Any infection is MRSA. Hives? I’m certain I’ll suffocate from severe allergic reaction.  Menstrual cycle off a day—I have growths on my ovaries.

To make matters worse, doctors have wanted to remove my uterus and my gallbladder, and to biopsy my kidney. None of which happened. But the fact of their recommending such procedures makes me think I have bad parts to begin with.

If you’ve got your wits about you, you’ve probably gathered I have a wee bit of a phobia to illness in any form—real, made up, imagined, or non-existent.

What many do not understand about this illness phobia is that no amount of exposure makes a dang difference. With exposure therapy, if someone is afraid of bridges, you can slowly and decisively assist him or her in overcoming the bridge fear. A common therapy strategy might be first showing pictures of bridges, next playing with toy bridges, later taking photos of bridges from afar, and then crossing a small bridge over a creek. If therapy is effective, then the person eventually will cross a bridge as a passenger, then drive assisted, and later cross alone. Sounds logical.

Doesn’t apply to illness: First look at pictures of people who are sick, next play in filthy area, later… not helping! And getting sick and sick over and over again, doesn’t help either. Done that.

I haven’t been feeling myself, lately. Which is significant. Generally speaking my self, due to a host of syndromes and conditions, is relatively fatigued, a little melancholic, and a bit sore in the muscles. So, I hadn’t taken too much note of my intense fatigue, until I could barely function most of the day. My doctor had in the meanwhile sent me my annual blood test forms in the mail (twice), which I avoided like the plague (or in my case the common cold). I finally dragged myself to the doc when the heart palpitations and shortness of breath kicked in. By the day I got my stubborn self to the doc’s office, my forehead was peeling like a rattlesnake sheds.

The good news is it turns out those eight extra pounds are not my fault! And either is this depressions cloud I blamed on the Washington winter weather. Turns out I have hypothyroid.

Guess what this hypothyroid reckoning does to my mind. Here’s the conversation I had with my doctor. I kid you not.

Me: “Well, now that I know I have hypothyroid, I guess I should mention that I’ve been having trouble swallowing. I read that’s a symptom, too.”

Dr. “Oh.” She pulls out a lab slip. “Well then we better get an ultrasound for nodules.”

Me: “Nodules? Can I die from nodules?”

“No”

“I can’t?”

“No.”

“What is the worse case scenario?”

“If they find nodules, the protocol is to keep a watchful eye on them. If they grow, they’ll likely drain them. But nodules are not deadly.”

“Oh, good, but what about cancer? Could I have cancer? Or did my blood tests rule that out?”

“No. Your blood tests didn’t rule that out. But thyroid cancer is very, very rare.”

My eyes grew super big and I swallowed hard.

Dr. added: “And the cure rate for thyroid cancer is 100%.”

“Oh!” Huge sigh. “Thank you so much for adding that. How long will I have to take the pills?”

“For the rest of your life.”

Long pause.

Me: “But what if the end of the world comes? How will I get my pills?”

 

 

 

 

Side Note: (euphemism for I can’t stop babbling)

Taking into consideration the four types of thyroid cancers, I recently researched, the combined cure rate is only 95%. For better effect, in the writing above, you’ll note, I fearlessly overcame my fear of the word cancer. The title Me in Parts means I feel as if I’ve sorted myself into parts with all my constant sickness analysis. The good news is, I always live like I’m dying.