Unstable

Before my diagnosis, I worried about having rapid cycling bipolar disorder. Daily, I experienced spells of heightened excitability and mental energy followed by profound boredom and lethargy. The pattern of my cycles troubled me—they lacked regularity.

After my son’s diagnosis, I observed his behavioral patterns and eventually connected them to my own.  Twice exceptional people often have difficulty regulating their emotions.

I wrote this lament the night before I came down ill with the flu a few weeks ago.  This post captures my experience of emotional disregulation.

I feel so unstable, unusable, broken.  I cannot find balance in a life full of ups and downs. Daily glee skyrockets over little things– a cup of coffee or a tender glimpse of a loved one. I am unbound, untethered and out of my mind with bliss.

A moment later, ensnared by stress and the unexpected, I am smashed and hopeless.

I lack self-regulation.  I struggle fiercely. I struggle incessantly. So does my son. We are both untied and colliding, collapsing, crushing each other until we are flat and empty.

I am a cheery person, I insist. This is my identity. I think wonderful thoughts and ask why, why, why, in an exuberant, perky voice.

Yet, when I am not enraptured with questions or drawn into a favorite task, my idle mind grinds in ever tighter circles. It winds in on itself, tighter and tighter until the center coils into a deep dark dot. My life becomes blackness.

I fight.  I bounce, pace, and whirl. It helps.  I float toward the surface again. My buoyancy is tenuous.  Soon I will be lost, spinning away to the tiniest black speck.

Each day unfolds in song and dips in and out of despair and exhaustion. It feels pointless until it feels sacred again. I live the same day, forever.

I read the books and hear the words of what to do, but deep, deep grooves are etched in my brain. Like canyons, like caverns, neurological folds block the light or reveal a brilliance so blinding that I become senseless with joy.

Comments

  1. @aspienaut says:

    What a great piece, I find it hard to access my emotions sometimes and make sense of them. It is overwhelming at times. What beautiful writing, thank you.

    • A Quiet Week says:

      Thank you Aspienaut. Connecting, processing and mapping emotions is difficult work for those of us on the spectrum. I enjoy your empowering tumblr. We are kindred spirits. 🙂

      Lori

  2. quirkyandlaughing says:

    That’s a rough one to cope with. You’ve expressed it beautifully in your writing. Are there solutions for it? I had a lot of moodiness before diagnosis, but most of it was caused by Asperger’s-related health issues that are thankfully almost fully under control. It’s exhausting to be blind-sided by different moods & energy levels at every turn.

      • quirkyandlaughing says:

        Oh, where to begin? My most tangible heath issues were chronic vertigo & vomiting, thyroid nodules & brain lesions. I had others, too, but that’s the main idea.

        The first miracle was cranial-sacral chiropractic treatments, which drastically reduced the vertigo. The chiro told me to see an allergist based on the vertebrae that were consistently out.

        The next big turning point for me was realizing I was diagnosed with food allergies as a kid, but they were never accommodated. They included wheat, dairy & corn (VERY difficult to avoid). I had to change my whole lifestyle to avoid these foods, but it helped. Tremendously.

        Next, I was strong enough to work out, which restored my vigor. And now I’m juicing, which I think may be changing my whole worldview. LOL. Seriously. Juicing rocks.

        I’ve also begun biomedical intervention, which is big into the food allergy thing and supplementation (I had lots and lots of vitamin/mineral deficiencies).

        Overall, I strongly encourage all Aspies in poor health (especially digestive health) to seek out biomedical intervention from a DAN! doctor. It’s expensive & controversial. But it’s not nearly as expensive as traditional medicine was for me, because it was all a waste.

        Biomed gets a bad rap. Our family sees Jenny McCarthy’s doc who has somehow become infamous for hating Aspies, chelating, saying vaccines cause autism, and claiming he has a cure. But, in real life, he loves Aspies, says there is no cure, advises against chelating in most cases, and says genetics cause autism. Methinks Jenny McCarthy may have misspoken a bit (this is it’s her kid’s doc – NOT the guy she misquoted on Oprah)

        If you do consider biomed, however, I would be very careful of hacks as anybody can say they are a DAN! doc. I would definitely go with one of the more famous MDs – the first visit has to be in person, but after that they skype.

        I hope some of this helps. What are your health issues?

        • Helps a lot. Thanks for taking the time and sharing. I need to reduce gluten and corn and sugar—feel so much better when I do. And I need to get back to juicing. Thanks so much. 🙂

      • A Quiet Week says:

        Hmmmmm.

        I’m lost in the replies. Sam–I hope you feel better. In western society we have so much of the same food everywhere, it is wonderful to choose from the bounty of fresh fruits and vegetables. I know I benefit from a good diet.

        Quirky, goodness, what an ordeal. I am glad that you found something that works for you. Feeling well physically blends with mental health. I have my greatest difficulties during cold/flu season. A tiny bit of unwellness impacts me profoundly.

        The amount of stress a person on the spectrum feels impacts their health. It is an awful, circular progression. Cheers to you both, and wishes for good health. 🙂

    • A Quiet Week says:

      Quirky,

      Thank you for your insight. I think that everyone can benefit from a good diet and exercise, especially when underlying health issues impact your well being.

      For me, special diets have not made a difference. But they do help others and should always be investigated.

      I sing the praises of sensory integration therapy. I don’t believe that it rewires the brain, but it helps me to modulate my moods. I take physical action when I feel too revved up or worn down. But it is not 100%. i am actually putting together a post on this..stay tuned and thank you for dropping by! 🙂

  3. I so needed to read this. Thank you. You captured exactly how I feel! I used to worry, too, until I observed my son. Anything can send me up or down—always some source—a tone in a voice, a comment on a post, an expression from a loved one, worries, frets….and on and on. Thank you so very much. This is an important post for more to read. Hugs ~ Sam (Are you on Facebook? I started a small group there. Can I put a link to this post on it?)

    • A Quiet Week says:

      Thank you Sam. How many people have felt the same as us, over the years and never understood why? We are so blessed to be enlightened. I think that understanding the spectrum of autism and how neurological wiring effects personality and behavior will be one of the biggest breakthoughs in modern psychology. What marvelous tools we have to understand ourselves! How much we can help our children and granchildren.

      Yay us!

      You are more than welcome to share on FB, no need to ask! I share relentlessly! Here’s my FB page: http://www.facebook.com/pages/A-Quiet-Week-in-the-House/366582703354650
      (I think!) I thought I saw Everyday Asperger’s on FB. I’ll be looking for you! 🙂

  4. Mados says:

    Beautiful post, it flows like a poem and makes a lot of sense.

    I like this very much:

    “Yet, when I am not enraptured with questions or drawn into a favorite task, my idle mind grinds in ever tighter circles. It winds in on itself, tighter and tighter until the center coils into a deep dark dot. My life becomes blackness.

    I fight. I bounce, pace, and whirl. It helps. I float toward the surface again. My buoyancy is tenuous. Soon I will be lost, spinning away to the tiniest black speck.”

    Sounds like a rapidly spinning cycle of energy extension and contraction, light and darkness, an energy jo-jo …

    Also I find this touching:

    “I read the books and hear the words of what to do, but deep, deep grooves are etched in my brain. Like canyons, like caverns, neurological folds block the light or reveal a brilliance so blinding that I become senseless with joy.”

    I can relate to that very much, and it is beautifully phrased.

    • A Quiet Week says:

      Mados, thank you for your comment. I sometimes feel abashed sharing such personal and intense posts, but your encouragement emboldens me.

      So many people see my cheery, happy face that they do not realize that I struggle. This year I have learned that I am not alone. I feel validated by you and others that understand. The little poet in my heart is flushed with joy. 🙂

      Lori

      • Mados says:

        I am happy to encourage & embolden such acute & beautiful writing:-) The privacy / intensity balance is an arch typical blogging dilemma (and an off-line dilemma as well;-) The right answer to ‘how much self-exposure do I feel OK with’ depends a lot on the responses I guess (or lack thereof). Well done for showing the courage to verbalise some of the systematics* of your mind. The frameworks, beautiful imagery and insights are inspiring and very useful.

        “This year I have learned that I am not alone”… That is very important.

         
        *not sure if this is a real word…

  5. alienhippy says:

    I love your art, it’s so very original.
    I so need to get out my paints, I have a sketch ready and I keep writing instead.
    Love and hugs. Lisa. xx 🙂

    • A Quiet Week says:

      Lisa! Thank you so much! Please forgive me, somehow a bunch of replies got eaten!

      I love collage and fiddling with it on the computer is even more fun! I’d love to see your art work! 🙂

      • alienhippy says:

        Hi Lori, it’s not a problem my friend.
        Some of my art is on my blog under the tab “Art and creativity” I also had a mess around with fractals and flames. I am self taught I didn’t do well at school because of not being able to read. Also I only learned to switch a computer on 4 years ago so digital art is beyond me.
        I learn new things from youtube videos now. I mostly just play with paint and enjoy mixing it up on canvas and paper. I love colours. Love and hugs. xx 🙂

        • A Quiet Week says:

          Awesome! I’ll check it out. I’m self taught as well. I am so grateful that you embraced that computer! It is wonderful to meet and keep in touch! 🙂

  6. Angel says:

    I love your art too!!

    And this post is beautifully written.

    It also makes me feels like you were in my head spying on my neurons or something. 🙂

    I was concerned for years about my mental state. I wasn’t the only one, LONG story(s)! I spent years trying to figure out what was wrong with me. And praying for God to fix my brain. I thought I was bipolar, a narcissist, among various other things throughout the years. I did get diagnosed with depression around 1998, but I was not a typical clinically depressed person and medication did not work for me. (There is a long story there too.) The thoughts could leave as quickly as they came depending on the day. However, I have had spouts where I felt like the thoughts would not stop and I couldn’t eat for days.

    Since becoming more aware of how my brain works I have allowed myself to walk into the places I need to go in order to come out safer and faster. Before I had guilt about my dark thoughts, and I felt like something was terribly wrong with me. Lisa describes them as shutdowns, I go into my world of words, numbers, and music knowing that it will pass even though it feels like it won’t. I don’t know if you have had struggles with these feelings as well, but your words brought me comfort.

    Your imagery written here is magnificent and the beauty that manifests from your words are so healing. If that makes any sense.

    Thank you!!

    • A Quiet Week says:

      Angel,

      Thank you for such a thoughtful and personal comment. I can relate to your concerns about your mental health as well. I have had trouble with periodic depression since puberty–about the same time the other girls went from being indifferent to being mean.

      But, it was never a typical depression. I could be low one moment and then explode into song an hour later. I like the way that Lisa describes them, as shutdowns. I am grateful to you both for helping me find the perfect word for that mental state.

      When I go into my world, there are numbers, but mostly I look for patterns. When I dissapear for a few days, I’m lost in collage. Hunting textures and patterns is all consuming. And you are right, it seems like forever, but then some internal limit is reached and I can check my email again! 🙂

    • A Quiet Week says:

      Oh, goodness. I am so touched that my words could give you some comfort. I think if I could do any good in the world, it would be to reach out to kindred spirits.

      Hugs,
      Lori

  7. Amy says:

    I am so enjoying your blog! I have been going in circles the last couple years about my own son now 9. And have recently settled on aspergers-gt sincereading Different Minds(Lovecky). Reading your blog is confirming for me what I know, but the “proffessionals” in our area seem to not understand. (Luckily we now have my son in a school prog that gets it–OT is part of his life now–loved that post of yours too- “OT Fairy”–thank you!

    • A Quiet Week says:

      Thank you for visiting me, Amy. I am sorry for the difficulty you are having with proffesionals in your area. Since we are in the Northeast, near MIT and Harvard, a little pocket of Aspergers specialist exists.

      If we did not have the benefit of a diagnosis, I would never be able to make sense of my son’s behavior, or even my own feelings!

      I feel doubly blessed by the online communities and resources. It is so easy to connect with others and learn how improve your quality of life.

  8. DJ says:

    I stumbled upon this post and it brought me to tears. These words describe exactly how I feel on a daily basis. I have never been diagnosed with Asperger’s but many signs were there growing up. I feel despair and I do not know where to turn.

    • A Quiet Week says:

      DJ,

      Thank you very much for sharing with me. I would have never considered Asperger’s myself had we not two diagnoses in our family. Understanding emotional regulation is one of the most difficult aspects of my neurology.

      Whether you are on the autism spectrum or not, the issue is how you feel and what to do about it. I keep my balance by feeding my brain its favorite things: my special interests (art, literature, psychology). I also avoid drains on my mental energy: overstimulation due to social or environmental interactions.

      In the modern world, these are easier said than done. You are not alone in how you feel. Check out my blogroll at the bottom of my page to connect with many wonderful people on the spectrum.

      I wish you the best. thank you for visiting.

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