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.

When my Dissociation makes me feel lost

It has been a long time since I have written anything. I have been doing some better, but struggling more than ever with feeling lost.

There are moments when I forget about my Dissociative Disorder, and then I am talking to a good friend about his son and I can’t remember his son’s name.

These moments of amnesia make me afraid to pose as normal to the world. I have thought about trying to go back to work, then I feel this inner flooding of anxiety.

I ask inside to my other parts what we are so afraid of about going back to work. Apparently, they just don’t think we can do it.

It is possibly true. I know I may seem like I am ok sometimes, but then I look back on my day and realize I only accomplished 1-2 things. On an intense day, I might have struggled to get a 3rd thing done.

I am not sure why I can’t get more done in a day, except for this damn amnesia and feeling confused and lost so much.

I have been trying my best to be present for my children as they both have issues going on and need me. Some moments I am good about that, other days I feel inner parts distance themselves from the children and contemplate suicide.

The therapy is a struggle lately. My child parts are so hurt and don’t understand why we are seeing the T less often. Our insurance would rather pay for hospitalization than outpatient care. Brilliant business people.

The therapist wants us to trust her, but the younger parts feel like she doesn’t care about us. The T struggles with this because she says she doesn’t understand what she can do to show parts she cares about them.

Then, the parts reveal that because she is not abusing us, she doesn’t care about us.

She says she is never going to abuse us, so she is never going to care about us?

Then there are older parts who say we should just stop going to therapy. This doesn’t go far because the Little’s surface and put us in a Little hurt state of mind.

Anyway, like I said, I am feeling lost. Don’t know what to do about much. Contemplating giving up my career and going to work for a low paying job or no job at all. Can’t seem to make any decision about that or anything else.

Lost. That is me.

Lost and alone

I have been quiet lately, feeding off my mom’s voice in my head that if I don’t have anything nice to say, I shouldn’t say anything at all. So, I am breaking the rules.

Lost would probably best describe how I have felt most of the time lately. I can’t remember things, much more so than usual. My sense of “time” is completely off. Can’t tell you if it has been one week or 2 months since things have happened.

I am living day-by-day, not knowing if I will make it through the day.

I plan for my future and my demise all in the same hour.

I am suffering from wicked thoughts of suicide that are in my brain but don’t feel like my thoughts. It’s confusing.

I try not to act on any of the suicidal plans, yet at times I find myself getting up to go do whatever is my demise of the hour. Most times I catch myself when I am getting up and am able to stop myself. Sometimes I haven’t been completely lucky with that strategy.

Some days I feel morbidly depressed. I have resorted back to hiding in my bedroom as much as possible. I spend countless hours staring out the window, and suddenly I have an extreme depressive feeling, which follows with a graphic idea of killing myself.

I don’t know where these graphic suicidal ideas are coming from as I am much more practical than to think of these ways if I was suicidal.

I imagine there is extreme anger and pain behind the graphic ideas about my demise.

As I said, it gets so confusing. I think parts of me are “leaking” into me in a way that I cannot distinguish me from them. As such, their thoughts seem to make perfect sense to me.

Yes, I should stab myself with a butcher knife and lie down in my bed to bleed to death over night.

That is so not me, but yet it is me.

I would never do that to my children, but in my head it feels as though I will.

The world is so lonely for me right now. I am fortunate to have a spouse, therapist, and friend who know about some of this and are trying to get me help.

But, I worry no help exists.

In my life in the mental health system, there have been times when I know if I just went and worked on “x” I would stabilize or feel better. Honestly, I have no idea what x is for me this time.

Lost, pushing through each day hoping to gain some clarity the next day. It doesn’t come.

I am wasting my life, lost, never feeling grounded to this earth and my life.

The clock ticks, and ticks, and ticks. My dilemma stays the same. My fragility about my life continues.

I must have some hope hiding in me somewhere, but it is well hidden. The confusion in my mind keeps it from coming to surface. It is amazing to see the mind work so intensely against itself.

I plan for the future. I plan my demise. I don’t know how this will play out. I hope for the best, whatever that turns out to be.

Switching between identities

Normally, I switch a lot during therapy because we are dealing with triggering material. Outside of therapy, it is usually more controlled and subtle. Sometimes, because I have co-consciousness with my other identities, I don’t even realize I have switched at first.

There are times when it is like the box of crayons (my identities) have been thrown up in the air and my identities don’t know which way is up. During these times, different parts pop up to “front” the body in no particular logical order.

In a system of other identities like mine (Dissociative Identity Disorder), there needs to be rhyme or reason to what parts are out when. For instance, certain parts need to be out for our children, as these parts know how to function as a parent. Other parts need to be out with my spouse, as these parts are in relationship with her, and are appropriate to have a sexual relationship with her.

This past week, my system feels like the internal house is burning down, and we don’t have the order and reason we normally do for who is out at any given moment.

My spouse, who knows I have DID, but doesn’t usually notice my switches, has definitely noticed this week. Little parts and angry parts and parts who like to drink alcohol have been out a lot. None of these ways is my normal way of being with her. Even though we have multiple parts who can be out with her, they are similar enough in a range of expressions that she knows what to expect.

The chaos and anxiety is high in our inner world. We are trying each day to tame it and get back to our normal. It sometimes seems like it is happening slowly, and other times feels like it is not happening at all.

I had a neurofeedback session a couple of days ago that was supposed to help with the depression and anxiety. It did help, but still the underlying chaos in my brain is still hanging around.

My memory is horrible right now. In fact, I can’t even remember what set us down this path we are on.

My spouse is being helpful and taking over more of the parenting jobs right now.

A couple of days ago I had my kids in the car and they had been arguing with each other and then both asking for something that I would have to say “no” to, and then listen to them both respectively melt down. Instead of saying no, I found myself not being able to breathe or talk. I was paralyzed. I said nothing. I fantasized about getting out of the car and leaving them there.

After that experience with my children, I knew I needed a break. I am usually rock solid with my kids. Instead, I was becoming paralyzed with anxiety, which is not helpful to my children, even though they didn’t even notice.

My switching is more like a Rolodex this past week. Rolodex switching is no fun. It is scary to go from identity to identity with no rhyme or reason.

To function at the level my life is set up for, I need to have more controlled switching. Otherwise, I will end up in the hospital and on the streets and lose everything I have fought to achieve in my small life.

It is funny, my private insurance company has denied my outpatient treatment, and even made it so my antidepressant is unaffordable. That’s fine, because I don’t like to take medicine anyway. On one level, I really believe they would like me to kill myself so they don’t have to pay for my claims anymore. But, if I don’t kill myself, it means my life goes backwards and they have to pay for inpatient treatment again, which is more than what it would cost for the entire year of getting me the outpatient treatment I need to avoid the hospital. Makes no sense, and don’t have the mental energy to keep fighting them.

I will do my best to hang on today. To try to move back toward our normal. It is unusual for me to be in this state of chaos for this long. I am worried, but I will probably forget that I am worried shortly.

Having DID is no picnic. It is not scary the way it is portrayed in the movies. Mostly just scary to the person who has it.

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.

Barely noticing I have been missing in action

I have been MIA from the blog and other areas of my life lately. As typical for me, I have to really think where have I been.

I think maybe I have not been present as much as other parts of me who have other interests and have been using most of our time. Sometimes I barely realize when this is happening.

I have had moments where I have thought I need to write a blog entry, but then I vanish before I am able to do that task. Since I am not as present lately, it leaves me kind of scattered to write a new post (like this one probably is).

I have also been solo parenting for the past two weeks and it has been unusually difficult. School was out because of winter weather, my kids have both been sick at different times,, and I have been dealing with some difficult and new material in therapy.

I made it to the finish line as my spouse is now back, thank God. I only almost had two nervous breakdowns as we were into the second week.

Parenting is not usually this difficult for me, so I was frustrated to feel this way while the spouse was gone. Oh well, the kids are alive, fed, and made it to school when they weren’t sick.

The spouse was only mildly irritated with me for the chaos in the house because of the way I do things when I am in charge.

I had a therapy session a couple of days ago that was unusual in that I kept Rolodex switching throughout the appointment. By the end, I was frustrated because the time evaporated quickly, and it felt like a very chaotic and unproductive session. I kept “waking up” during the session and said to myself inside “why am I talking about this topic?” It wasn’t until later that I realized that was happening because I kept switching between parts.

I suppose this was the rebound of doing the very difficult session prior to that.

Sometimes we need a break, and just can’t be all things to everyone. Hopefully, the distraction of other parts doing their things will enable us to eventually get grounded again and feel more present and less scattered.

Thank you to those who checked in on me. I am doing ok, and working on getting back to my normal.

I hope to have something more interesting to write about next time!

A letter to my children about my dissociative disorder

I am so sorry you have a mom with mental illness. It is not fair to you, but please know I am doing the best I can to give you the good life I never had.

I try my best not to struggle in front of you, but I know sometimes I can’t hide it very well. I know you probably wonder a lot about me, and I am sorry you are not in a place to say anything to me about it, and I am sorry I haven’t had the courage to talk to you more.

I love you both with all my heart, and I never want to hurt you.

I know when I hide out in my room, or don’t want to go outside with the neighbors with you, I am missing out on some of your childhood. I am sad about this, but I am doing the best I can.

I want you to be able to count on me, and I think you can. I would like to think I have been there most of the times when you needed me.

I feel incredible guilt about the times I have disappeared from the family and have been gone weeks or months without you really understanding where I was.

I know it doesn’t seem like it, but I was gone those times because I wanted to stay in your life as you grow up. You see, sometimes mommy gets to feeling so bad I don’t want to stay alive, but I know I must because you are the most important thing to me and I don’t want to hurt you by leaving you like that.

When I leave you those times, I go to special places where they help people like your Mom feel good enough to come home.

I know you know your Mom is sad and depressed at times, but there is also so much grownup stuff going on with me that makes it hard to live my life sometimes.

Sometimes my brain is haunted and hurt by things that happened to me in my childhood. This is a really difficult topic for me to tell you about because I really don’t want you to know how horrible the world can be, and I don’t know how to tell you how horrible some of the people you love have been to me.

I hate I am hiding things from you because I want you to be able to trust me. I also don’t want you to be worried about me or you.

It devastates me to be so afraid to tell you who I really am.

When I was a young child, so many people hurt me in lots of different ways and my brain could not handle everything happening to me.

You don’t know this about me because I work hard to hide it from you, but I have Dissociative Identity Disorder (DID), which is why I see my therapist so much and am not working right now.

DID is not like what you may have seen on the internet or tv. It means I have lots of different parts of me, and these parts of me were created because of the trauma I experienced as a child. These parts can seem like different people living in my body, and some are even younger than you, but all of them are still part of me and not something you need to fear.

On tv, DID seems to be portrayed as people with parts who are dangerous or really dramatic. My parts are not like that. They are an assortment of people who have have formed out of trauma, so most of them are hurt parts of me, and others are parts of me who developed to function when the hurt parts of me couldn’t.

You never have to fear me and my parts. Since I came from an extremely abusive childhood, it is so important to every part of me for you to get the childhood you deserve to help you flourish in life.

One day you may ask tough questions about my childhood to try to understand how my mind is separated into parts. I will do my best to answer your questions, but know it is so hard for me to explain the truth to you because I hate to take away your joy and innocence by introducing you to what may seem like evil in this world.

No matter what, know that I struggle to get well and stay alive because of how much I love you. After a lifetime of pain, you are the greatest joy I could have wished for.