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.