Category Archives: Trauma

I Hate Complex-PTSD

(Trigger Warning – Discussion about Trauma)

I hate Complex-PTSD. There is no way around it, I hate it.  I got triggered today.  All it took was for me to be sent spiraling was for me to notice that a relative of mine had changed their profile picture on Facebook.  It was a completely innocent thing for them to do.  There was nothing wrong with the picture that my relative chose, but for me, it was enough to trigger a cascading effect of interacting layers of trauma that I have accumulated over the years.

Complex Post Traumatic Stress Disorder (C-PTSD) is a condition that results from chronic or long-term exposure to emotional trauma over which a victim has little or no control and from which there is little or no hope of escape.”

C-PSTD can occur in such cases of:

  • domestic emotional, physical or sexual abuse
  • childhood emotional, physical or sexual abuse
  • entrapment or kidnapping.
  • slavery or enforced labor.
  • long term imprisonment and torture
  • repeated violations of personal boundaries.
  • long-term objectification.
  • exposure to gaslighting & false accusations
  • long-term exposure to inconsistent, push-pull, splitting or alternating raging & hoovering behaviors.
  • long-term taking care of mentally ill or chronically sick family members.
  • long term exposure to crisis conditions.

How did I get to this point? I grew up in an emotionally neglectful and abusive household.  I married what I knew and the covert emotional manipulation and emotional abuse only got worse.  I have also been taking care of mentally ill family members for over 16 years now.  Then there is the medical trauma I endured 15 years ago that resulted in my initial diagnosis of PTSD which eventually grew to C-PTSD when more and more layers of trauma were exposed.

Post-Traumatic Stress Disorder (PTSD) and C-PTSD are similar, but they do differ in causes and symptoms. C-PTSD results more from chronic repetitive stress from which there is little to no chance of escape. PTSD can result from single events or short term exposure to extreme stress or trauma.

***Remember, C-PTSD is a stress disorder, not a weakness or defect of character nor is it a personality disorder although it is often misdiagnosed as Borderline Personality Disorder.

From The Center for Treatment of Anxiety and Mood Disorders:

CPTSD Symptoms

People who have gone through a long-standing, extremely traumatic situation may exhibit both physical and emotional symptoms related to their ordeal.

Emotional symptoms may include:

  • Rage displayed through violence, destruction of property, or theft
  • Depression, denial, fear of abandonment, thoughts of suicide, anger issues
  • Low self-esteem, panic attacks, self-loathing
  • Perfectionism, blaming others instead of dealing with a situation, selective memory
  • Loss of faith in humanity, distrust, isolation, inability to form close personal relationships
  • Shame, guilt, focusing on wanting revenge
  • Flashbacks, memory repression, dissociation

Victims of C-PTSD may also have physical symptoms, such as:

  • Eating disorders, substance abuse, alcoholism, promiscuity
  • Chronic pain
  • Cardiovascular problems
  • Gastrointestinal problems.
  • Migraines

From Out of the Storm:

Symptoms Shared by CPTSD and PTSD

According to Cloitre et al (2016), CPTSD shares three main symptoms with PTSD which include:

  • Re-experiencing the past – in the form of nightmares and flashbacks.  While in PTSD flashbacks tend to be visual, in CPTSD they are often emotional.  That is,  a sudden, overwhelming rush of emotions such as anger, shame, humiliation, abandonment, and of being small and powerless much like a child would feel when abused.  These are referred to as Emotional Flashbacks (EFs). and can last for minutes, hours or even days (Walker, 2013) . 
  • Sense of threat – constantly on guard or hypervigilant, strong startle reaction
  • Avoidance – of thoughts, feelings, people, places, activities relating to the trauma (e.g., dissociation, derealization)

Symptoms of CPTSD Only

Cloitre et al (2014) suggest that CPTSD differs from PTSD in that it has three additional symptoms:

  • Emotion regulation – Emotional sensitivity; reduced ability to respond to situations in an emotionally appropriate and flexible manner  
  • Negative self-concept – Feeling of worthlessness and defectiveness. Walker suggests that those with CPTSD suffer from toxic shame and have a virulent Inner and Outer Critic.
  • Interpersonal problems – Difficulty feeling close to another person; feeling disconnected, distant or cut off from other people (depersonalization, social anxiety). 

Everyone is unique and the above list of symptoms is not complete and not everyone with C-PTSD will exhibit all the symptoms listed. I, for one, do not have the physical symptoms of “Eating disorders, substance abuse, alcoholism, promiscuity”. There was a time I wanted revenge, but I couldn’t stand that feeling and fought hard against it. Revenge never solves anything and can ultimately destroy the person seeking revenge. I have wanted to die, but I have never had suicidal thoughts.  I also have never been violent, destroyed property, nor committed theft. I do not have cardiovascular problems, but I do experience chest pain during anxiety and panic attacks. I have had to establish healthy boundaries and am no longer in contact with certain family members beyond an occasional email.  I also never lost my ability to form close personal relationships with others.

What makes experiencing all this worse for me is that things that trigger me are typically seen as happy moments by most people, so there is little to no understanding as to why I cut myself off from exposure to reminders and why an unexpected exposure to a photograph of my happy sister, her happy husband, and her new baby affected me so badly.  I didn’t experience anger seeing that photo.  I was terrified!  Pregnancy and children birth reminders are horrible, panic inducing triggers for me. The reason for this is my medical trauma resulted from me being pregnant and giving birth.  I am not going to go into detail, but more information can be found here and here.

I got triggered this morning by a reminder of that horrific time in my life that was my medical trauma, the lack of emotional support I experienced from my family and continue to experience, and all the loss I experienced and continue to experience.  That one trigger not only triggered me regarding my medical trauma, but every  emotional trauma after it. There is a lot.  As I stated before, I was in an emotionally abusive marriage and came from an emotionally manipulative and neglectful home life that followed me into adulthood.    

It is 11:31PM now. I am still struggling. I have been crying off and on all day, but most of my crying was this morning.  How have I coped?  I used music and running.  I let myself ride the melody and lyrics of specifically chosen songs and played them over and over again.  I let the music flow through me and let the emotion flow with it.  I had to.  No more pretending.  I am safe now.  I don’t have to hide my anguish anymore. I have to let my pain out, but I have to do it in a health way.  I have been a runner for 24 years.  Running helps me regulate my anxiety and helps me control my meltdowns.  Running is not for everyone, but it is a way for me to help ground myself when the whole world feels like it is collapsing all around me like it did today.

My theme song today was “Total Eclipse of the Heart” by Bonnie Tyler.  I felt this song fit with how I was feeling and how I wanted to express myself, because I had no words, just tears and pain.  (Lyrics) 

After my run tonight I found myself still feeling lost. The song I needed to listen to was “Send me an Angel” by Real Life.  (Lyrics)

I have been waking up lately with this song playing in my head. I wouldn’t mind at all having an angel sent to me right now with some guidance and emotional support. Days like this are so hard, but they do eventually get better.  I just have to keep moving forward.  A better day will come.  

 

 

I Can’t Anymore . . .

NOTE: I feel that this writing is lacking, but I am struggling right now and needed to write and release it out in cyber space in order to reduce the build up of emotions inside of me.  I feel there needs to be a trigger warning, but I am not sure what to warn about. There is mention of depression and the thought of wanting to die, but please understand that I am not in any way suicidal. My hope is that this writing may help someone else that is also going through a difficult situation. Now, deep breath . . .

I can’t. I just can’t anymore. I feel so done with everything.  I know I am grieving again, but a person can only take so much emotional turmoil in their life.  I don’t want to have to start over again.  I have done this so many times before.  I don’t feel I have the energy anymore, but I will carry on.  I always do.  I will continue on, but tonight as I type this, I don’t want to.  I am so tired of it all, the pain, the heartache, the feeling of loss.

Oh, gosh, the pain, always with the pain. I am not just talking about physical pain.  I have a lot of that. My body has been degenerating, well, for as long as I can remember.  Ehlers-Danlos Syndrome will do that to you.  What is hurting me more right now, what is gouging at me, is the emotional pain. Physical pain takes a huge emotional toll on a person, but the lack of emotional support from loved ones makes it almost unbearable.  It is so bad that you want to die.

Do I want to die tonight? No, but I want to give up.  Everything I have been fighting to hold on to for almost 20 years is disintegrating right before my eyes.  It might be an archaic idea, but I am the type that bonds for life.  Unfortunately, I bonded with a man who doesn’t hold these same views.

I have written a lot about this man’s behavior over the past several years. It was a way for me to process through the grief and here I am again, grieving over another lost dream.  A dream of a new future, a new start with this same man who I naively thought shared the same dream as I did. 

I was wrong. His lifestyle choice seems to be more important to him than his own family and our relationship.  It is so frustrating.  I know this man loves me and he loves his children, but he is clueless when it comes to doing what is necessary to maintain a healthy relationship. 

There is a pull to be angry, but why? I have been there before many times.  It is an emotion a person needs to go through when processing things, but one needs to work past the anger.  Sadness and loss is what I feel tonight.  Sadness and loss is what I am familiar with when dealing with this particular man.  I guess tonight this sadness and loss is filled with more answered questions, then unanswered.  At least I have that.  For too many years I did not even have that, which only led to high levels of anxiety. 

Tonight, what I feel is depression and the knowledge that I have done all that I can. It is all on him now.  I fear that this is where it will finally stop, my ongoing effort I mean.  For nearly two decades I have tried and tried, but I can’t anymore.  There comes a time when there is enough evidence to show that you have hit a dead end, because you have done all that you can and still have gotten nowhere.   

I have been through so much in my life, so much crap. I have Complex-PTSD because of it, layers of trauma over many years. I am the autistic one, the person whom others have claimed has no empathy, no feelings, and has been called a robot and stuck up, but have also been told I am too emotional and too sensitive. Well, which is it?  You can’t be too emotional and too sensitive, but also lack empathy and feelings.  It doesn’t work that way.

I can tell you with all honesty that I have extremely strong empathy, so much so that it hurts. I have a very hard time separating what I feel from those I am around, particularly those who I care about. I might just not express it in ways that the general population may expect.  I feel it all, though.  I can’t seem to filter it out, just like I can’t filter out sensory input.  It is all bombarding me at once. 

I am a textbook autistic person. I say what I mean and mean what I say.  There is no hidden message and there is nothing written between the lines. I am a blunt and honest person who adheres to the virtues of integrity and honor.  I am also loyal and trusting, much to my own peril.  As a friend of mine once said, people like she and I seem to have a target on our foreheads, because of how we are. 

Where I come from, non-autistic people seem to be the ones who “lack empathy”, at least they seem to be this way towards others who don’t think like them. This same man that I have been referring to has come to some realizations as of late. 

My basic needs are not the same as his. It has taken him a very long time to come to realize this.  How I express my happiness is also not the same as his way as well as what makes me happy is not the same as what makes him happy.

More on this here —-> I am Real, I am Human, and I Feel!

I do not understand why he would have so much trouble understanding this, but he is still struggling with this whole concept.  This non-autistic man seems to be only able to see the world through his eyes, yet I am the one who is said to be lacking in “theory of mind”.  No, I am not lacking in “theory of mind”. I am just different.

——————–

This is my blog that I wrote in July 2013 entitled “Theory of Mind – The Debate Continues” .

Here is Rachel Cohen-Rottenberg’s blog entitled “A Critique of the Theory of Mind” .

And Ariane Zurcher’s blog entitled “An Empathic Debunking of the Theory Of Mind” .

——————–

How do I deal with all of this? I practice mindfulness.  From What Is Mindfulness? :

“Mindfulness means maintaining a moment-by-moment awareness of our thoughts, feelings, bodily sensations, and surrounding environment.

Mindfulness also involves acceptance, meaning that we pay attention to our thoughts and feelings without judging them—without believing, for instance, that there’s a “right” or “wrong” way to think or feel in a given moment. When we practice mindfulness, our thoughts tune into what we’re sensing in the present moment rather than rehashing the past or imagining the future.”

I suppose my writing is one way for me to practice mindfulness. Before I started typing tonight I felt like my life was imploding.  The life that I wanted is basically over and I just couldn’t take it anymore.  After putting myself in the moment and allowing the emotions I was feeling to come out in written form, I am starting to feel the pressure that was building up inside me subside.

Deep breaths .  .  . I will not give up. I will get through this. 

Hear My Battle Cry  (A poem I wrote.)

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”

― Martin Luther King Jr.

Personal Responsibility, Self-Advocacy, Education, and Support

On November 26th I wrote about Finding Hope. That writing was part of my Wellness Recovery Action Plan (WRAP) that my Peer Support Specialist is helping me put together.  The “hope” portion was only the first part. There are four other concepts to this writing that I needed to figure out what their meaning was to me.  These remaining concepts were easier for me to write about than writing about “hope”, but my writing didn’t turn out like I thought it would.  Instead of separating these last four concepts out, I ended up combining them all in a long narrative. 

It has taken me years to write my story. A bit here and a bit there. So much struggle.  So much pain. When I was first diagnosed with PTSD, it was recommended to me to get my story out to help with my healing process, but I just couldn’t.  This is why it has been so difficult for me to conglomerate every thing that has happened to me.  I made an attempt in June of 2015 to combine everything up to that point when I wrote The Volcano is Awake. I cried writing it.  It reads choppy, but it seems every time I try to write my story that happens.  I am still trying to heal. Healing takes time and how that healing plays out is different for everyone.  My ability to write to the point at which I have is quite an achievement for me, because for so long I couldn’t even do that much. 

In this second part of putting my WRAP together, I was faced with determining what personal responsibility, self-advocacy, education, and support meant to me. As I stated before, I was not expecting my writing of these concepts to turn out like it did. I am not sure what that means, per say, but I think it demonstrates where my processing of things are, where my focus is, and where I am in my struggle to heal.

So, here it goes. Some of this writing is repetitive information from past blogs, some of it is not. This is me putting my story out explaining my ongoing journey to wellness.

I am stretched quite thin and have been for some time. My responsibility to others, particularly my family and students has led me to neglect my own self-care.  The one thing that I promised myself when I was 18 years old was that I would run as often as I could and I have kept that promise through two difficult pregnancies and countless injuries.  I have always lived an active healthy life style, even when I was a child I was active.  I have strived to keep my body strong and healthy and it has served me well. 

I was born with a congenital condition that has been slowly destroying all my connective tissues. My body cannot produce enough collagen to bind my cells together properly.  The only way to be diagnosed with this condition currently is by keeping track of years of injury, and just not any injury.  I am talking about joint injury, bleeding and bruising problems, and organ prolapse.  I have a long list of injuries and surgeries that a person my age with long history of living a healthy lifestyle wouldn’t expect to have.

During my high school years, just prior to my first surgery, I was told by my doctor that if I let myself get out of shape I would lose my ability to walk. My joints were already that lose and dislocating. At 27 years old, after the birth of my second child, I was told that the only thing holding my body together anymore were my bones and muscles.  At 38 years old, I was told that only my muscles were holding my body together anymore.  I am currently 41 years old and my bones are now essentially floating in my body. It doesn’t take much for them to move out of place and cause considerable pain.  It also doesn’t take much to injure myself.  Just doing everyday things can cause me to end up with an injury that lays me up for days or weeks. I have to be very conscious of how I move my body.  I have to keep my upper body always aligned with my lower body and that is not an easy thing to do.    

I have been in physical therapy eight times since I was 14 years old. I have been told to stop running for years, but I refuse. My physical therapist doesn’t even try to tell me to stop running anymore.  He says now that, yes, running is hurting me, but it is also keeping my body strong, which is needed to hold it together.  

Running is also good for my mental well-being. There are days when I go running in the woods and scream at the trees.  I cry. I shout. I let everything out.  By the end of my run I feel tired, but purged of all that stress in my head that was tearing me apart.

I also write. Writing has become my “voice”.  Through the encouragement of another teacher who saw an ability that I didn’t realize I had, who was also a mother of an autistic son and a blogger herself, I found my “voice” for the first time in my life. I was 36 years old at the time I received my Autism diagnosis, which was after both of my children were diagnosed.   I was never taught how to be an advocate or to even how to advocate for myself, but as a parent and a teacher, I figured it out on my own.  Finding my “voice” only empowered me further. 

I now write two blogs, I have a Twitter account, and I run three public Facebook pages plus my private Facebook page. I am also a Founding Member of ANUE (Advocates for Neurodiversity and Unique Empowerment).  ANUE has become primarily an online support and resource group, but there is an option to have face-to-face meetings.  I am in contact with people all over the world through the internet and have meant some really amazing people.  

Would it be better for me to have more contact with people face-to-face?

Yes, I do believe it would, but my situation does not allow for that, so over the last four years I have created a large social network online. It has been a life saver for me, but in times of crisis, more face-to-face support would be better.

Becoming an advocate was not something I decided one day to become. I wanted to be a teacher since I was seven years old. I struggled with the decision of becoming an Art Teacher or a Science Teacher for years, but in eleventh grade I took my first Geology class, and that was my deciding factor.  I was going to become an Earth Science Educator and I did. My dream was to teach science in a public school setting and I did accomplish that.  I have been a certified teacher for 18 years, but I have not held a certified position in four years.  Due to my declining health and responsibilities to my family, my children in particular, I am no longer able to work in a classroom on a daily basis.  I still teach, however, just in a different way than I had originally planned.  This is where becoming more of an advocate comes in.

I went back to graduate school four years ago with the goal of earning a Master’s degree in Science Education. My passion lies in Science and I wanted to continue working in the field of Science Education.  Unfortunately, as always, life happens when you are making other plans.  My marriage collapsed unexpectedly two months into my program.  It was devastating, but I had to carry on for the sake of my children and for myself. 

I managed to make it into my second year of grad school and it was at this point when I began to realize there was a problem. Due to my executive function problems, I needed accommodations to get through the certain classes. My classes were mostly online and the university was in Montana with the requirement that two lab courses had to be completed on campus.   I live in Washington State. The University felt they could not provide the accommodations that I needed to be successful.  I had to make a choice, struggle through knowing that I would eventually fail or transfer into a different University all together.  I decided to transfer to Lesley University in Cambridge, MA. 

My experience with Montana State University and my experience as a teacher, a parent of two children with a variety of disabilities, and with ANUE showed me that my focus needed to be placed where my untapped strengths were pointing me toward, I am a teacher and an advocate and I needed to focus on Autism Education. Lesley University follows Universal Designed for Learning Standards.  Basically, an accommodation that is good for one person is good for all.  The accommodations I needed were already in place and I didn’t even have to ask for them. My experience at Lesley University was amazing and I finished in two years with a Master’s in Education with an Autism Certification.

My hope with getting a Master’s degree was that it would open more doors for employment with the ultimate goal of becoming self-employed. I even have started my business online as an education consultant and tutor.  I have not been able to really focus on it, however, due to the circumstances that my family is currently living in and my own mental health.  Once things start to calm down and become more stable, I fully intend on developing my business more.

Self-employment, a livable house, a place that I can call home, these are all important goals, but I think the biggest goal I have is to be finally able to heal. I have Complex-PTSD and I am in autistic burnout.  I keep pushing and pushing myself each day just to get through.  I am tired of trying to survive. 

I WANT TO LIVE!!

It is going to be a rough ride, though, to actually reach that point of stability where I can actually reach my goals. My support team is going to be such a pivotal importance in the coming years.  

Who are these people who will be that much needed support?

I am so used to struggling on my own. It was how I was raised.  I grew up with very little to no support, particularly in the emotional support department. My emotional needs were essentially ignored. This was very difficult for an undiagnosed autistic child who struggled with debilitating anxiety mixed with depressed states who didn’t have the words to express how she felt nor did she understand those feelings.   I was often told by my parents that their job was to provide clothing, food, and shelter. That was basically it.  I had to learn to make it on my own.  My marriage was like that as well, very little to no support, even during my darkest times in my life.  That situation is improving, however, but very slowly.  

It took me a long time to get myself to a place where I would actually ask for help. I was just so used to being told “no”, that my “voice” didn’t matter, that my needs didn’t matter.  I am more disabled that I even am able to acknowledge to myself, and it is disheartening, but I know I have worth and that I matter. It has been quite a journey getting to the point where I can say that.

I HAVE WORTH!!

I MATTER!!

So, who are these wonderful people who I could turn to for help?

I created a Mind Map to sort that all out. Doctors and counselors (for both my children and I), local friends, online friends, ANUE, immediate family members, fellow teachers and advocates, my pets, there are actually a lot of people and critters listed, expect for my extended family members. My hope is with time the bubble for Other Family Members will grow, but at this time it is not possible.  My parents basically disowned me for reasons I won’t go into here and I am unable to really speak to my sister for reasons that are too painful to discuss right now.  When it comes to learning about the effects of trauma and learning how to adjust my life due to my physical and neurological disabilities, I am a knowledge junkie.  I devour knowledge.  I am forever learning and I have a skill when it comes to researching.  I can find information relatively quickly and present that information in a manner that is easy for others to understand.  I am always looking for answers and new pathways to follow whenever I hit a roadblock in my journey through life.

I am still looking for the pathway that will allow me to get to a point where I can actually live and not just survive. I hope that day will come sooner rather than later.  I am tired, so very tired.

Finding Hope

NOTE:  This blog was originally written as a journal entry for my Peer Support Specialist as part of my Wellness Recovery Action Plan.  It reads somewhat choppy, but I wanted to share it nonetheless.  My children have given me permission to share their medical information as long as I don’t use their names.

(Trigger Warning:  Reference to suicide, emotional abuse, and trauma.)

“Hope is the life force that keeps us going and gives us something to live for. Hope is a crucial part of dealing with life’s problems and maintaining resilience in the face of obstacles. Even a glimmer of hope that our situation will turn around can keep us going.” – Joe Wilner (How We Lose Hope and How to Get it Back)

The word “hope” is defined as a feeling of expectation and desire for a certain thing to happen. I sit here staring at my computer monitor trying to think of things that bring me hope. Where is that feeling of expectation and desire for a certain thing to happen?  I seem to be lacking it.  I am in full-on survival mode and have been for some time. The feeling of hope seems to not be in the equation for me.  

I sit here reminding myself it has been bleak before, I mean really bleak. Bleak to the point where I didn’t want to live anymore.  I was never suicidal, I just wanted the physical and emotional pain to end and I only saw death as a way to finally escape it all.

What kept me going?

My responsibility to my two young children is what kept me going. I refused to leave them without a mother.  They were only a baby and a toddler at the time and they had a father who wasn’t always around and grandparents who only wanted to involve themselves on their terms, which was limited. 

This all happened years before I was diagnosed with Autism, years before we knew both my children were also autistic, and years before realizing my daughter also had Bipolar. Medical trauma, grief, chronic pain, post-partum depression, family neglect, emotional abuse, isolation, lack of a proper diagnosis, lack of support from anywhere lead me into the worst autistic burnout I have ever experienced and without a proper diagnosis I had no idea what was happening to me.  I thought I was losing my mind.  I was diagnosed with PTSD during this time.  This diagnosis would eventually grow into Complex-PTSD.  

I have experienced burnout many times since, but never to the extent of how it was during those very dark, dark days of my late twenties/early thirties. Unfortunately, I am finding myself horribly burnout out again, more so than I have been in a very long time.  I am 41 years old.  My daughter will be 16 next month and my son will be 14 two months after that.  One October night in 2012, my world once again began to fall apart.  My husband, whom I had been with since 1998, sat me down and told me he didn’t want to be married any more, he didn’t want the responsibility of a family any more. 

Things continued to get worse and worse. My husband was self-destructing from a life-long struggle with untreated severe clinical depression and he was taking the family down with him.  I will not go into detail of the three years of hell that my family went through over this, but I will say that my son developed PTSD from emotional abuse by his father.  My daughter grieved like her father had died, yet there was a stranger walking around with his face. 

Fast forward three years, my husband finally agreed to get professional help and has since come home. We have spent the last year trying to rebuild our family.  Five months ago we moved to a very isolated area with dream.  We would build a house together and start our new life as a family, all four of us together.  Unfortunately, life happens when you are making other plans. 

We have been living in what can be described as a glorified shed with tarps for walls. It is the end of November. We have no plumbing or insulation. What electricity we have comes from heavy duty extension cords that are plugged into the meter outside and drugged into the house. We can’t run much on them or we end up popping circuits.  We do have a wood stove, but with no insulation, it can only keep the house just below 50 degrees Fahrenheit, the bedrooms are even colder.  We are miserable.

Due to unforeseen financial problems over the last few months, who knows yet when we will have plumbing. My in-laws’ house is about a football field’s length away. We utilize their kitchen and plumbing. They are very caring people, but their house is small and they are very elderly.  My mother-in-law has had two strokes, is diabetic, has blood pressure problems, and needs round the clock care which my father-in-law provides.  Their house is very unpredictable and stressful.  It is hard to explain, but no one can handle being in their house for more than a few hours. We are looking at another six to eight more months without plumbing. It realistically could be longer than that.

Even though I call my husband “my husband”, we are not legally married any more. He made sure of that during those three years of hell.  He recently has informed me that he doesn’t know what makes me happy and he doesn’t know how to meet my needs when it comes to our relationship.  That really hit me hard. After all these years, he still doesn’t know how to be a husband to me (he has admitted that he has sucked at being a husband and father), but there is a positive note to this.  He wants to learn and he is listening.  Progress has been at a snail’s pace, though, painfully slow, but for the first time he is putting in real effort. He is committed and is determined to make our relationship work.   

Then there is my employment situation. I have been a certified teacher for 18 years in grades Kindergarten – 12th grade.  The 2011-2012 school year literally almost killed me with stress.  Over the past four years I have slowly been transitioning myself away from working a daily teaching job.  I can no longer physically or mentally continue working every day and also care for my two children who cannot attend a regular school day at a school.  They are both homeschooled, but are also enrolled in our local Home Link program, and my daughter receives her education services at our local high school by attending only mornings Monday – Friday. 

I finished my Master’s degree last April. I now officially have the credentials to say I am both a professional in Autism Education and a Science Teacher, yet I am still under employed and I don’t see how that is going to change anytime soon.  As of now I have five invisible disabilities:  Autism, Generalized Anxiety Disorder, Ehlers-Danlos Syndrome, Complex-PTSD, and Dyscalculia.  I struggle everyday with chronic pain, Misophonia, anxiety mixed with depression, and I struggle to live in a world that is not designed for someone like me. I have been on ten different anti-depressants, five different anti-anxiety medications, and three different sleep aids.  I have tried a variety of pain medications as well.  I have paradoxical effects with all these types of medications. Nothing works for me and only makes things worse.

My medication is running. I have been a runner for 23 years and I fight every day to stay out of a wheel chair.  Due to the continued degradation of my connective tissues all over my body from Ehlers-Danlos Syndrome, it is only a matter of time before running may be taken from me. I have already had to give up weight lifting, backpacking, mowing, gardening in other than large pots, picking boxes up, moving furniture, the list keeps growing every time another injury occurs or another body system begins to fail. I carry on, though. I just brace up my joints, bind up my torso, and continue to persevere.  I have to, but it gets harder and harder when the feeling of hope just isn’t there. The chronic pain wears you down.

With all of this, I am still struggling in thinking about what brings me hope.

The first thing that comes to mind as I have been typing all this out are the two young people who kept me going before when I found myself horribly burned out, my two children. They are everything to me and I am determined to persevere above all odds for them, always.

I have been told by my own mother that she would never be able to do what I do. If it had been her raising my children instead of me, my daughter would have been sent away a long time ago. As for my son, his needs would also have been ignored just like mine had growing up, because he is so “high-functioning” in my mother’s eyes.  Neither my son nor I are “high-functioning”, but we are quiet enough to be easily ignored.

Both my children have Dysgraphia and both are autistic (my daughter as an accompanying expressive language impairment and my son does not).

My daughter was also diagnosed with Bipolar II (but it may instead be Schizo-affective Disorder – Bipolar Type) with debilitating anxiety. She takes six type of medication either once, twice, or three times a day depending on the type. We have alarms set to help her remember to take her medication. She has been hospitalized once for suicidal thoughts and hallucinations telling her to use knives to kill herself.  

My son was also diagnosed with Generalized Anxiety Disorder, Panic Disorder, Agoraphobia, and Social Anxiety as well as Misophonia. He also struggles with re-occurring depression. He takes two types of medication once or twice a day depending on the type. He has been on suicide watch twice.

Then there is the glimmer of hope that comes when I look in my husband’s eyes now and see the man I married in there. In his eyes I see an older, tired, and struggling version, but I see hope there, too.  He sees a future for us, a future that I thought we had lost that one October night when he decided to give up on me, our family, and the life we had. 

I have not reached the same point where he is, but I want to.  This place where we live now is where he grew up.  This is his world, but it is not mine.  This is why I am not at the same point where he is.  This world is so foreign to me.  The language is different, the mannerisms are different, the way of life is different, and I am cut off from my world due to our rotten living conditions.  No internet and all my belongings, my tools I use to self-regulate and make my environment safe and comfortable, are all locked up in storage.

My senses have been on overdrive since moving here. Everything is too loud and too bright. It hurts here.  Then there is the problem of my husband’s recent poor choices haunting us.  During those three years of hell he involved himself with four women in ways he shouldn’t have.  One of these women he purposely used to rip our family apart and my children and I caught him with her. Neither had feelings for each other, which just made it worse for me.  This woman ended up marrying my husband’s first wife and they both show up at my in-laws’ house on a regular basis. They are also both invited to family gatherings, gatherings we can’t go to because of their presence.  I am reminded of my recent trauma and loss all the time.  I can’t get away from it. This has taken a considerable toll on me.

“Though, when we begin to lose hope, things can seem bleak. When we run into constant resistance and are prevented from reaching our goals we can start to feel like there is nothing to live for. If we can’t get to where we want to be and don’t feel in control of our life, what’s the point?” – Joe Wilner (How We Lose Hope and How to Get it Back)

I have been finding myself asking, “What’s the point?”

What is the point? Why do I keep going when all there seems to be is endless struggle and pain?

The answer:

Because I must!

My life would be very different if I had been dealt a different set of cards. I know this, but there is no point in lamenting over that fact. I was dealt a certain set of cards and I have to live with what I was given and make the most of it. 

Over the years, I have written a lot about persevering and not giving up. I have to keep on fighting.  I have to keep moving forward.  I have to keep trying to reach that light at the end of the tunnel.  When I was at my darkest all those years ago, I kept telling myself that the tunnel will end and light will be reached again.  I knew it would happen, because that was the only option available.

I am there again telling myself that this dark, burned out tunnel that I have found myself in will eventually end. It has to.  I don’t know what I will find when I reach the light again.  My life may once again be transformed into something I wasn’t planning on, but at least I will be there to see that transformation. 

I will persevere. I will keep moving forward.  I will keep on keeping on.  That is the only option I have. 

 

Perhaps that is where my hope really lies, by keep on keeping on . . .

 

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.”

― Martin Luther King Jr.

Panic Attacks – A Comprehensive Emotional Nightmare

(Trigger Warning: Discussion about panic attacks and emotional trauma.)

It happened again. I got triggered and the result was a bad panic attack.  Actually, I would say all panic attacks are bad.  The reason I say this last one was particularly bad is because of where I was at the time and who I was with.  I was in public with my family at a festival/carnival in a town that I did not live in. I had no safe place to go, but I knew I had to get out of there, so I told my family I was going to take a moment and I just started walking fast away from everything.  I just kept walking and walking. 

I probably would have ended up in the hills outside of town if I hadn’t set myself down in a secluded spot away from people and the commotion of what was going on in town.  I set myself down, because I could still think semi-rationally.  I realized I had the keys to our van, so I couldn’t just keep walking.  I also realized that the panic attack was winning.  I couldn’t stop it.  I knew that I needed to stop to just let myself cry, so that is what I did.  I sat down in the grass with my back to the world and just let the panic attack over take me. 

The panic attack didn’t just happen out of nothing. There was a very specific reason for it. It wasn’t the environment that triggered the panic attack. I was actually having a fun time with my family exploring the various wares on display at the different tables.  My son had just gone on a carnival ride with his friend and my daughter had just finished a snow cone.  We were laughing, enjoying our family outing.  We were just getting ready to get something to eat when she showed up with no warning.

I don’t know why this person who triggered me felt she needed to come up to my family and me. She had been told to keep a respectful distance from us some time ago. She claimed it was the polite thing to do to come up to us. In most cases, when you see someone you know, it is considered polite to come up and say “hi”, but in this particular case it was just thoughtless and disrespectful behavior on her part. She won’t see this, but I want to say to her, “Stay away from me and my family! Stay away from my husband! Leave us alone so we can heal!”

I have no idea if she is even aware of the amount of psychological and emotional damage that she contributed to. She was the first to contribute to three years of hell for myself and my family.  I have Complex-PTSD and those three years of pain only added to the layers of trauma that I had already acquired. 

My panic attack yesterday left me feeling in a way that I am having trouble describing. Drained, depressed, embarrassed, still full of anxiety, sick to my stomach, headachy, dizzy, fearful, teary-eyed, emotionally sensitive, brain-fog, internally numb, out-of-control, remorseful, disconnected, disassociated, the list goes on.

A panic attack can only be described as a comprehensive emotional nightmare.

“A panic attack typically lasts several long minutes and is one of the most distressing conditions a person can experience. In some cases, panic attacks have been known to last for longer periods of time or to recur very quickly over and over again.

The aftermath of a panic attack is very painful. Feelings of depression and helplessness are usually experienced. The greatest fear is that the panic attack will come back again and again, making life too miserable to bear.

Panic is not necessarily brought on by a recognizable circumstance, and it may remain a mystery to the person involved. These attacks come “out of the blue”. At other times, excessive stress or other negative life conditions can trigger an attack.”

Panic attack symptoms can include:

  • rapid heart rate
  • sweating
  • trembling
  • shortness of breath
  • hyperventilation
  • chills
  • hot flashes
  • nausea
  •  abdominal cramping
  • chest pain
  • headache
  • dizziness
  • faintness
  • tightness in your throat
  • trouble swallowing
  • sense of impending death
  • tingling in your hands or feet

“A panic attack takes a very powerful emotional toll on the person affected. In addition to the overwhelming sense of fear in that is its primary symptom, the person can also be subject to more tangible symptoms associated with the fear of physical loss of control, perceived heart attack or even possible death. The realness, immediacy and overwhelming intensity of her feelings during these moments of helplessness and desperation cannot be overemphasized.”

For me, when a panic attack is triggered, it stems from prolonged emotional trauma. We need to remember that stress can trigger a panic attack. You do not have to have endured an emotional trauma to experience a panic attack.  We also need to realize that trauma is stress that has run amuck. There is a difference between routine stress and emotional and psychological trauma.

According to Emotional and Psychological Trauma: Causes and Effects, Symptoms and Treatment,

“Stress dis-regulates our nervous systems – but for only a relatively short period of time. Within a few days or weeks, our nervous systems calm down and we revert to a normal state of equilibrium. This return to normalcy is not the case when we have been traumatized. One way to tell the difference between stress and emotional trauma is by looking at the outcome – how much residual effect an upsetting event is having on our lives, relationships, and overall functioning. Traumatic distress can be distinguished from routine stress by assessing the following:

  • how quickly upset is triggered
  • how frequently upset is triggered
  • how intensely threatening the source of upset is
  • how long upset lasts
  • how long it takes to calm down

If we can communicate our distress to people who care about us and can respond adequately, and if we return to a state of equilibrium following a stressful event, we are in the realm of stress. If we become frozen in a state of active emotional intensity, we are experiencing an emotional trauma – even though sometimes we may not be consciously aware of the level of distress we are experiencing.”

How do you deal with all of this, how do you cope? First thing to remember when experiencing a panic attack is that you will survive even though it may feel like the world is ending, you can’t breathe, and your chest feels like it is going to explode.  Anxiety BC put together helpful strategies to help you get through a panic attack.  The tool box starts on page three and these strategies are also helpful for people who are witnessing another person having a panic attack.

Some of the strategies that Anxiety BC listed that I often use include:

1.  Calm Breathing: This is a strategy that you can use to help reduce some of the physical symptoms experienced during a panic attack. We tend to breathe faster when we are anxious, which can make us feel dizzy and lightheaded, which in turn can make us even more anxious. Calm breathing involves taking slow, regular breaths through your nose. However, it is important to realize that the goal of calm breathing is not to stop a panic attack because it’s dangerous, but to make it a little easier to “ride out” the feelings.

For more information, see How to do Calm Breathing.

KEY POINT: If you are using relaxation to help you STOP a panic attack, this is NOT helpful. If you are using relaxation to help you turn down the volume on the feelings (but not avoid them) this IS helpful!

2.  Muscle Relaxation: Another helpful strategy involves learning to relax your body. This technique involves tensing various muscles and then relaxing them, to help lower overall tension and stress levels, which can contribute to panic attacks.

 For more information, see How To Do Progressive Muscle Relaxation.

 Things you should NOT say or do while a person is experiencing a panic attack:

 DON’T:

  • tell them to calm down.
  • get angry with them.
  • yell at them.
  • tell them to get over it.
  • tell them they are being ridiculous.
  • freak out.

Things you SHOULD say or do while a person is experiencing a panic attack:

 DO:

  • Tell them they are safe. Repeatedly.
  • Tell them you are there for them.
  • Tell them they are not alone.
  • Remind them to breathe.
  • Take deep breaths with them.
  • Listen to what they need. Offer choices if they can’t tell you what they need.
  • Hold them if they need you too. Keep a respectful distance if they don’t.

The rate a person recovers from a panic attack, or trauma for that matter, really matters on those around them. Don’t try to put the person back into the fire if they have just calmed down.  There is an aftermath of a panic attack that has to be gone through.  Putting a person right back into a situation that triggered them in the first place will most likely just trigger another panic attack.  Healing takes time and it is different for everyone.  Understanding and patience are necessary in this situation.

 According to Ellen McGrath in Recovering from Trauma,

 “Not everyone who endures a traumatic experience is scarred by it; the human psyche has a tremendous capacity for recovery and even growth. Recovering from a traumatic experience requires that the painful emotions be thoroughly processed. Trauma feelings can not be repressed or forgotten. If they are not dealt with directly, the distressing feelings and troubling events replay over and over in the course of a lifetime, creating a condition known as post-traumatic stress disorder.

 Whatever inner resources people need to mobilize for recovery, they still can not accomplish the task alone. Depression and trauma are disconnective disorders. They do not improve in isolation. To fix them you have to be connected to others.”

My husband did the right thing yesterday. He didn’t get mad at me, he made sure I was safe by texting me, and he stayed with our children and made sure they were alright.  I had wished he could have been with me to help me remember to breathe, but I needed to protect our children first.  They did not need to see their mother falling apart like I was.

When we all reunited, my husband told me that he felt what that person did was thoughtless and that he was not impressed which was affirmation to me that he understood why I was triggered.  He also got us all home, got the kids settled, and then took me out for some medicinal nachos and respectful and supportive talking.  None of this on his part would have happened four years ago.  This is how much we grown as a couple after three years of hell.

PTSD sucks. Anxiety sucks.  Panic attacks sucks. Depression sucks.  Having supportive people that you can turn too makes all the difference.  I didn’t have that for so long, but now I do. There is still a lot of healing and processing that needs to take place, but we will get there, together, as a family.  This is the journey we are on now, a journey that will lead to healing for all of us. The road is going to be bumpy, with hiccups here and there, and occasionally sliding backwards, but we are all in it together to offer a helping hand, a shoulder to cry on, and warm arms to feel safe in.

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