Doing my best to manage my C-PTSD and DID while navigating a sick child

My son has been diagnosed with a serious neurological disorder called PANS, which explains the symptoms we have been seeing in him for years. Please take a little bit of your time and watch the documentary “My Kid is Not Crazy” on Vemio to learn more about PANS.

I have found that his diagnosis and the related experiences I have had since then has kept me in a constant fight-or-flight mode that I can’t pull out of for longer than an hour, and this has been going on for weeks. I’m exhausted.

My own complex PTSD from my severe childhood abuse has been activated in more ways than I even comprehend at the moment. I just know I am functioning in a state of chaos and fight/flight.

My Dissociative Identity Disorder is not helping as I have accidentally injured myself these past couple of weeks because I am so distracted by the conversations happening in my head.

I have done my best to hold my DID in check, but as I am nearing exhaustion, it is getting more difficult. Arguments between parts. Large chunks of time missing. New parts surfacing who are under significant distress. Parts worried for us, worried for my son.

And then there is this need for me to save my son. Not uncommon for any parent facing this situation, but feeling really out of control due to my trauma background. I really cannot stop myself from constantly researching, talking to professionals, going to appointments, and talking to other parents who are in similar crisis.

The ironic thing is that parents of children with PANS/PANDAS typically develop PTSD as a result of going through this nightmare with our kids. This I recognize in my fellow PANS/PANDAS parents, and do my best to help.

I know I need to find the balance between taking care of myself and taking care of my son, but I feel so triggered by the entire situation I really feel unable to stop.

As a child no one made any attempt to help me, but by God I will do everything possible to help my son. This logic is driving my being.

The similarities between my trauma and this situation are endless, but my mind is not clear enough to really dive into that now.

Though I know I am doing so much good for my son by searching for answers, I also recognize as a parent this is the first time I have felt my diagnoses significantly impact my ability to maintain stability and feel solid as a parent. Though my kids don’t notice, I do, and it worries me as I can’t stop myself from fight/flight mode and all that entails.

My journey has changed

Some of you may have noticed that I have been missing in action for the past month or so.

I was really not doing well and needed intensive inpatient help with managing the symptoms of my DID and PTSD, particularly the level of suicidality I was experiencing.

I decided to go inpatient and it lasted longer than I expected. If I wouldn’t have really pushed to get out, I still easily met the criteria of someone who needed to be inpatient. But alas, I always feel terribly restless and triggered when I am inpatient, so a month was as much as I could do.

I am now happily home with my family and working to transition back into my real life. Still figuring this out and hope to share it with you as I uncover the new path of my journey.

I experienced incredible levels of amnesia and confusion while inpatient, but I was still able to gain some important insights into a new direction for my life.

I plan to share these new plans with you as I unpack myself back into the real world and my real life.

For now, I can say I realize I do have a life to live while doing this work, and I don’t have to “fix” my life before I can start living it.

I am also happy to say I am not currently feeling suicidal, which is remarkable because that is my typical normal. I know better than to get overly excited about this as I know it can change on a dime, but I do feel a sliver of hope that it is currently absent.

Speaking of hope, I did manage to gain some hope despite the incredible amnesia, confusion, transference, and uncomfortableness I experienced staying in this inpatient unit. Nothing like being locked up and power taken from you as a survivor that is seemingly required for inpatient treatment.

I am feeling well today and I am looking forward to sharing my new journey with you, and my experience during my inpatient stay.

Thank you from the bottom of my heart for all the support I received from you all.

With love and hope to you all,

Kathy

I am not who I think I am

Today, I began my day getting triggered by my 6 year old son. I keep getting startled by him while I am sleeping in the morning, which then causes me to release all my fight or flight hormones in my body, and then I feel stressed and crappy at the beginning of my day.

Fortunately, it only happens while I am sleeping.

After getting startled awake, I then went to my neurofeedback appointment, which is a good place to go when you are feeling that way because they can help me bring my body back down to calm.

After calming my body, I then did another neurofeedback protocol I have been working with the last few weeks called “deep states.” I like this deep states work because it feels like you are dreaming while you are awake, and it helps you get in touch with your unconscious mind.

It is not like I go and my mind just accesses all my unconscious memories, but it does help me get a smidge more each time I do it.

Today, I processed a lot of familiar memories while in this deep state, and then I started having new memories that were upsetting to say the least.

I want to not believe these new memories from today, but even after I left I had the weirdest experience of having more and more memories involving the same person. It is like my brain would not stop downloading information into my awareness until there was no more room and I was utterly exhausted.

For better or worse, I had therapy today after neurofeedback.

In therapy, I was overwhelmed and felt suicidal. I had this feeling of impending doom because with these new memories comes the idea that I am not who I think I am.

My therapist thinks it is nonsense (my summation of what she said) that I am not who I think I am, but I don’t agree.

My identity today is based on beliefs I have about my life. It turns out my beliefs are wrong.

I built the foundation of my identity on the belief that my father loved me. No one else in my family did, but I thought my father did. I was wrong.

I have gone from believing I came from a family where one person cared about me, to understanding that I really came from a family where I did not matter to anyone, and was only in this family for their sick needs.

It makes sense now. When my father was dying, and I was sitting there with him everyday, he looked at me with pity, not love. He told others he loved them, but not me.

My false picture and selective memory of my father helped me create who I am. Since that is now known to be false, I am nothing but the garbage they believed I was.

I know I can get through this and define myself, but at the moment it doesn’t seem possible. The building blocks that make up my life are not what I thought.

I know some people might think I am dense for not realizing my missing childhood memories are going to make me feel horrible. But, I already know of horrific things that have happened to me. My childhood is already unbelievably horrible.

How can it be worse? I guess I answered my own question.

How other’s trauma affects my PTSD

I am terrified as I write this. Literally feeling sick to my stomach from stress. My spouse lays next to me having no idea of the meltdown going on in my head, and I don’t say a word because I don’t want to appear crazy.

The evening started out uneventful. After we got the kids to bed, my spouse asked again if we could finally watch the movie “Sully.” I had been nixing that idea for the past couple of weeks when we were deciding what to watch.

I learned during 9/11 I have an unusual experience with my PTSD. I found when I was watching the nonstop coverage of 9/11, my own PTSD became activated at such a level as if I were actually involved in the incidents. The lines became very blurry, and my PTSD symptoms were extremely high.

I can still remember driving through downtown Atlanta on my way home from work and sweating as I looked up at the high rises above me. I was absolutely certain one was going to come tumbling down on me from a terrorist attack.

Since 9/11, I became very attuned to the fact that if I had witnessed a car accident, which is not uncommon in Atlanta, I would replay the scene and the sounds and the stress of it over and over in my head as if it had happened to me.

I have learned to avoid a lot of things since I became aware of how these things were affecting me. I try not to even watch the news anymore. Thus, I knew I should avoid a movie replaying a traumatic event, but I didn’t want to look crazy to my spouse who really wanted to see this movie.

As we watched the movie, I had moments where I could barely breathe, and other moments where I felt panic and wanted to cry. I was crying on the inside. It didn’t seem to matter that I knew what was going to happen in the story. I seem to always over-relate to someone else’s experience of trauma.

Now, my brain is spinning and I am hearing what sounds like a passenger plane flying low around my home. The plane noise won’t go away. My spouse doesn’t hear anything, so I know it is me going crazy.

I know it isn’t real, but the noise won’t stop. I am filled with anxiety. I am telling myself the noise isn’t real, but the sound of the impending airplane is so loud and continuous I can’t ignore it.

I have medication that would help in this situation, but I have worked so hard to not take medication for the betterment of my health.

I am hoping somehow writing about this will calm my symptoms down.

Why doesn’t it help to know this is just my PTSD?

I am so angry at myself for having this twisted brain that reacts to other people’s trauma like this. The anger, fear, and shame now have me feeling suicidal.

You would think with the self-awareness I have about my PTSD, and how this continuous noise is not real, it would make me be ok. It doesn’t.

I am irrationally terrified over a stupid movie. My self-loathing is kicking in. My belief that I don’t want to live life with this kind of terror in my head is kicking in.

Make the noise stop.

It hasn’t.

Will I forever be this tortured soul who can’t seem to get rid of this trauma brain?

I still hold hope one day I will be free. Until then, I work to survive the imprint left on my brain.

December, my most brutal month of the year

Oh, December.

The month starts with my birthday, and even after 5 decades, I can’t bring myself to be happy about my birthday.

Growing up, my birthdays were especially painful for me because my family never allowed me to celebrate them. I can’t recall any recognition of my birthday, which just reinforces the cruel messages my family sent to me.

I don’t matter. I don’t really exist. I should do everyone a favor and kill myself.

I wish the birthday thing got easier, but I have actually spent the last two out of three years in psych hospitals for my birthday so I wouldn’t kill myself.

This year I have been really struggling to stay out. I want to be present for my kids’ Christmas month. Yet, every day I am in touch with my struggle and trying to fake my way through the holidays.

Last weekend I tried to do something special for my kids, so I took them to Christmas shows on Saturday and Sunday. Normally it is something I enjoy. Sadly, I feel guilty because I kept looking at my watch to see when the show was going to get over.

Anxiety is flowing underneath the surface.

I am struggling to stay sane, to stay out of the hospital, to not ruin my kids’ Christmas, to stay married, to not run away, to not fire my therapist, to be compassionate with myself when I do erratic things like randomly schedule an appointment with a new therapist whom I know nothing about and not sure why I made the appointment.

My PTSD is especially bad right now. The triggers are happening over little things. Noises. Stupid noises keep triggering me.

I am coming off as crazy to adults who hold a significant conversation with me. I know I am a wreck and acting in ways I really should be hiding.

My narcissistic, abusive mom is coming this week for the holidays. I said she could come because I think it could be her last.

I have to reconcile in my head as she presents herself as a normal person, with the memories of her harming me so severely as her daughter that my life has been mostly ruined.

I am also coming to terms with how much she harmed me by not only doing cruel and extremely abusive things to me, but more importantly, not loving me since I was born.

It is hard to sit with knowing your family doesn’t love you. It is hard to stay grounded to this earth with that knowledge.

But, still I persist through this magical holiday time when families are supposed to go out of their way to show their love for each other. Except in my family of origin it is all a fraud. Yet, we do it anyway.

Hoping tomorrow I do a better job of being holiday happy for my kids as the most important thing for me is for them to have what I did not.

Today, I got this

Today, I refuse to be a prisoner to my past. I have been fortunate in that I have managed to accomplish a lot in spite of growing up in a home where I was not loved and abused on a daily basis.

I am fortunate to have accomplished what I have. Maybe just lucky. Either way, I am grateful to have gained and experienced as much as I have.

My greatest blessing has been being able to parent two beautiful children. For all the shit the universe has sent my way, I finally won the universe lottery with my children.

With all my many blessings, my life is often still a shit-storm. I am affected every day in some way or another by the horrors of my childhood. But still, I persist.

I have wanted to give up. My love for my children kept me here during those dark times.

Today, I am glad I am still here.

After a really difficult two years, today I finally feel “good” and am living with some clarity that has alluded me for some time.

I feel like someone of value. Someone who matters. Someone who can contribute to this world.

Yes, I can.

I have had this feeling before, so it scares me a little as I know it can be ripped from my being again.

I can become “dirt” again.

But today, yes today, I will not let my perpetrators and demons rule my life. I accept them as part of who I am. I accept them as part of what has made me into the beautiful person I am.

Yes, I have experienced a lot of evilness in life. I was raised and hurt by a lot of evil people in this world.

But, I am not evil.

Experiencing evil does not mean evil owns you.

We each own ourselves. We may need to take our time clearing this evilness from our memory banks, but most importantly, know that we are not evil no matter what was done to us.

We have the opportunity to own and choose our futures.

Today, I know I own mine. I got this.

Screw those who treated me like garbage. I am a beautiful human being who is capable of so much.

No one can take my soul from me. It’s all mine, and I choose to live and love and contribute to this world.

The beginning of grief

Today has been a shit day.

My fucking therapist came back from a much needed week off, and is on her game and ready to tackle the subjects I avoid.

Fuck. I want to get better, so I am trying really hard to talk about what she thinks I need to talk about.

Fuck. She wants me to talk about and feel grief over the fact that I didn’t have a Mom, and instead had a monster to watch over me.

Fuck. I feel dead inside. I told her my mom feels dead to me even though we know she is still alive. I feel nothing for her. I learned from the very beginning she was to be feared, and I wasn’t to be loved.

Fuck. I know I need to do this but I can’t find it in me. I am searching and asking among my parts. I am scared exploring this grief could obliterate me if I find it. But, I look, knowing it could incapacitate me and render me back into the psych ward.

Fuck. I found a little substance about this grief/mom thing in my session today. My inside world revved up and felt like total chaos. Parts started talking some about her and us. Thoughts of cutting my wrists or throat kept weaving around in my head.

Fuck. My system crashed into a younger part who doesn’t talk or walk, and seems to only want to go to sleep. The part is in flashback and having body memories and reacting to sounds in a PTSD way. The part seems confused about where we are. I am so off course I can’t pull us out of this part.

Fuck. My spouse needs to go to the Lady Gaga concert she has been excited about. I can’t seem to pull out of it, but my outside children will need me to watch them tonight. Finally, someone gets us out of bed with the help of my spouse. The flashbacks are still happening. The part is still pulling us in. Finally, we break away.

Fuck. I need to go pick up my son. Can I drive? Can I speak? Can I snap out of it and act normal for him. Get grounded for fuck sakes. I mean, at least get back on planet earth. Ok, here, but just barely.

Fuck. The kids are home and in bed. I feel incredibly sad and like crying, but not letting myself explore to find out why. An insider says I know the fucking why. Yeah, it’s a minuscule piece of the grief seeping in.

Fuck. I hate that bitch of a monster Mom I had.

The Benefits of Neurofeedback for the Traumatized Brain

Neurofeedback

Let me begin by saying I am a huge believer in the amazing benefits of neurofeedback for everyone. In fact, if you were around me daily, you would probably hear me griping about why neurofeedback is not done in every doctor and therapist office in the country, and the madness of insurance companies not wanting to pay for this very effective tool for so many ailments.

I was first introduced to neurofeedback this past Summer when I had gone to an “integrative” treatment center for trauma. As someone who was becoming more and more frustrated by the short-comings of talk-therapy alone, I was looking for something that would address the entire mind-body-spirit of my being.

I have experienced severe childhood abuse, which resulted in a lifetime of wrestling with Dissociative Identity Disorder (DID), Post Traumatic Stress Disorder (PTSD), Depression, and Anxiety.

Many of us would like to believe that once we escaped the childhood abuse, we are free to live a happy life. What most people don’t speak about is the lifelong affects severe childhood abuse has on a person’s brain and physical health, which contributes to the lifetime of struggling with various forms of mental illness as a result.

I have been in treatment for my severe trauma on-and-off for 28 years. I think during that period most people in the field of treating trauma would agree with me that they haven’t always known what they are doing with treating trauma.

Today, so much more research has been done to show more effective ways of treating trauma. For instance, EMDR has solid research behind it as a very effective tool to help many trauma survivors process their trauma faster, which means many people are not stuck with the aftereffects of trauma for their entire life. This is huge, but not always told or offered to trauma survivors. Though, to be fair, trauma survivors are more likely to stumble across EMDR than they are neurofeedback.

If you read a lot about trauma, or are in the field, you should be aware of the cutting-edge trauma experts like Bessel van der Kolk, Peter Levine, Dan Siegel, Pat Ogden, and Stephen Porges. There are a lot of other so-called experts out there, but most of them are what I would term “old school,” as they have not embraced the significant importance of addressing the mind-body-spirit when attempting to help people with trauma. They are sticking mainly to talk-therapy only as an approach, and this is a horrible disservice to those who have been traumatized.

I live on the East Coast, and found myself not making any progress with the swamp of trauma symptoms I was stuck in while I was doing extensive talk therapy only. I decided after doing a lot of research to head to California to get help with my trauma symptoms that were so severe I wasn’t able to function in my life. I was desperate as I had been in bed for 17 months, and generally not participating in my life,

After arriving in California, I quickly had an entirely new vocabulary for trauma treatments, and I was open to just about everything. I am tempted to go into all the different therapies here, but I want to stay focused on the neurofeedback. Neurofeedback therapy for trauma survivors was a given for every therapist and good trauma treatment center I looked at on the West Coast.

Ideally, when you begin neurofeedback, you want to get a QEEG or “brain map,” which is a snapshot of your brain and how it functions over a fairly short period of time (for me, it was 40 minutes under different scenarios). This brain map is so valuable because it can be compared to what a normal functioning brain looks like, and it can also be used to show that during the brain mapping period, your brain might look similar to someone who has anxiety, ADHD, PTSD, pain, depression, etc.

In my case, my brain map looked worse than even I expected, so it was a little overwhelming to sit with the results. I had done a brain map of my son who has some attention and sensory issues, so I had an idea what it was supposed to look like.  In layman’s terms. my brain showed a shit-storm of color in areas that should have shown up white, and my brain waves were extremely erratic and all over the place outside the normal range. For someone with complex-PTSD, this validates the daily symptoms we experience.

I learned a very important word called neuroplasticity, which refers to the brain’s ability to reorganize and heal itself by forming new neural pathways. This concept is so, so important to think about when looking at healing trauma.

Once my rational brain came back online, I knew I could repair much, if not all, of what was wrong with my brain through neurofeedback.

Through only 15 sessions of neurofeedback, I came out of it with some extremely important results as a trauma survivor. I don’t know how else to put it, but my mind was stronger. I was no longer depressed. I had less anxiety and an easier time going to sleep. Most importantly to my overall healing from trauma, the 15 sessions put me in a place where I could regulate my emotions better, which means I could tolerate talking about the most difficult parts of my trauma, which is something I was not able to do prior to the neurofeedback.

The inability to tolerate difficult or overwhelming emotions is probably the single biggest reason why trauma survivors stay stuck in talk therapy and don’t make the progress they need to move on with their lives. Yet, my experience in the old-school trauma circles that dominate the trauma industry is that there is almost no mention or even knowledge about the benefits of neurofeedback for trauma survivors.

If I look today at all the mainstream trauma treatment centers in the U.S., there is no place that is currently utilizing neurofeedback despite the extensive research that supports its usage. The only places that seem to offer it are the places where your insurance will not pay, and you are expected to pay out-of-pocket $40-50k per month for treatment. That’s the only way to get intensive cutting age trauma treatment at this moment.

The good news is that you can find neurofeedback offered on its own in some outpatient settings. I live in a major city, and there are probably about 14 options listed on a Google search for people to pursue neurofeedback. Typically, if you have severe trauma, you can expect to do 30-40 sessions for the neurofeedback to stick for the rest of your life.

When I returned to my home city on the East Coast, I found an excellent neurofeedback provider, and I am really looking forward to updating you on the continued results I experience to lessen my symptoms and to help my brain function the way it is intended.

neurofeedback_1

My hope is that you take away from this that neurofeedback works for many, many problems people struggle with. Besides the symptoms of trauma, it has been shown to help people with ADHD, Autism, Insomnia, headaches, Anxiety, Depression, and overall improved brain performance, which is why you will hear of Olympic athletes who use neurofeedback to enhance their performance.

Neurofeedback is not new and whacky, There is lots of science to support it. Don’t expect your doctor or therapist to recommend it, because that is not likely to happen. But, if you are feeling stuck or want to get better quicker, it is a no-brainer to take advantage of neurofeedback to help heal your brain.

And if you think your brain is just fine as a trauma survivor, let me mention when I took the brain QEEG, I was feeling relaxed and nothing was bothering me too much. But, what showed up on the QEEG was a huge amount of anxiety that I am so used to experiencing everyday that it did not seem like a big deal and was unnoticed by me. This unnoticed anxiety I am used to living with has already caused me some serious health consequences.

musclebrain

The bottom line, if you have the means to do so, look into neurofeedback and give it a try. It is easy to do, and the results can be life-changing. I don’t know anyone who wouldn’t benefit from a stronger functioning brain, even if you think you have no issues. If you have a severe trauma background, do it. It will save you years of talk therapy time and money, and will give you a better quality of life.

 

 

My Brain After Trauma

Gehirn - Schwingungen 3

Some days, I like to forget about my horrific abuse history and think I am just another ordinary person trying to get by in this world. After all, I can get distracted by the things in life the same way my presumably ordinary neighbors can.

I appreciate the moments when nobody knows my big secret about having Dissociative Identity Disorder (DID) and Complex Post Traumatic Stress Disorder (PTSD), and that people think I am just another neurotic person, similar to themselves. I am a master at hiding my symptoms.

Then there are the moments when the truth slaps me in the face so hard I can barely stand up again.

This week I met with a doctor to go over my results of some cognitive testing and my QEEG, or brain map. I am very interested in alternative or nontraditional therapies in treating my DID, so I am working with a new “Brain Doctor,” in addition to my traditional talk therapy.

I have always known I am sometimes cognitively impaired, and certainly sometimes operating from a “trauma brain.”

Though I had neurofeedback this past Summer for about 15 sessions, the providers I used never shared what was going on with my brain—they shared positive statements about the neurofeedback results they were seeing. Never the baseline.

In my discussion this past week with the new doctor, it was explained as sensitively as it could be, that I am extremely cognitively impaired and my brain waves look like a badass, not good, electrical storm.

I was told calmly and slowly they have seen worse, but it is pretty bad. The doctor is a genuinely good person and an optimist, and believes she can help repair much of my brain problems, even as severe as they are.

Because I had my son go through this process for a different reason, I knew what the brain pictures were supposed to look like. You want the brain to appear white on the paper.

I was completely overwhelmed by the amount of color on every one of my brain images.

I thought I was really calm during the actual test being done, but the results make it look like I am an anxious wreck. I guess my body has simply become used to the free-flowing anxiety from my PTSD, and I only recognize it when it is over the top.

I showed my brain in my best state. Can you imagine if I showed it when I am doing really poorly?

PTSDbrain

Two years ago, I was working in a highly demanding job in which I was quite successful and made a lot of money. Today, I am not working at all.

The one sentence from the doctor that stood out to me was when she gently said “I can see why you are not working, your executive functioning is extremely low.”

A dagger in my heart.

The scribble scrabble brain waves on the page were not something I can deny. I don’t need to be a doctor to know it isn’t normal looking at all.

The mental anguish I feel on a regular basis has just been verified as totally real, and it is as bad as it feels. It is not hidden or made up. Through this QEEG, I let people see the mess of a brain I have. Lots of internal conflict about doing so.

“You’re such an idiot, why did you let people see what it looks like inside.”

My trauma has without a doubt destroyed the way my brain is supposed to function. Maybe I shouldn’t say destroy because my favorite word is all the buzz these days—“neuroplasticity” (when the brain can heal itself), there is hope through neurofeedback and other brain therapies to repair much of the damage.

I always thought I wanted to see what my “DID brain” looked like. At this point, I am feeling it was a mistake, but hopefully some day I will change my mind about it.

It is an overwhelming picture of myself. And, I actually feel shame about my brain. That’s a new one.

This morning I was looking at a job announcement that came to my email, and what followed were the voices in my brain telling me I can’t possibly work given the extremely low level of executive functioning I am at (confirmed by these test results). Sigh.

I always knew the abusers from my past ruined my brain, but I secretly didn’t want it to be true. Parts of me appear to be so severely abused. I didn’t want to believe they could be as badly abused as they felt and claimed. I realize now how much I was clinging to the hope that not all of my story was true.

It is hard to hide from the serious consequences of the severe abuse I endured throughout my life. It is sad when the ability to deny the consequences is gone.

 

Managing my ambivalence about Halloween

Halloween is tricky for me, and frankly, I hate it every time it comes around.

I am a mom to two kids who love Halloween, so I try so very hard to let them experience the fun of Halloween.

My spouse also goes over the top decorating the house with Halloween decorations. I pretend it isn’t there, and my spouse will never understand it.

My kids love Halloween. They love the dressing up, decorating the house, the endless parties, the pumpkin decorating, and of course the trick or treating and conquest of candy that comes with it.

I pretend the best I can for them that I like Halloween. I hate it. Though, in fairness, before I became pre-diabetic, I enjoyed eating their candy.

Halloween is a scary time for me. As someone who was raised to not trust the world, Halloween makes it all the more confusing. I can’t spot the truly dangerous people very easily because Halloween gives people permission to dress up and act scary.

Reality is hard enough for me, and then we have this stupid excuse of a holiday that drags out for a month of celebrating an alternative reality.

When I was a child, Halloween was also a scary and violent time for me. My flashbacks of Halloween are more like a real horror movie. That’s what is running through my head when I walk my children around for trick or treating.

I would prefer to pretend like Halloween doesn’t exist, and let the other adults judge me as “no fun.”

Sadly, for me, Halloween is just something to survive and get through the month.

I try to be happy my children are excited and having so much fun, but in the back of my mind, I am obsessively counting the minutes until it is over.