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.

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.

The obliteration of DID walls

I usually have a somewhat manageable life, though still difficult for sure. I typically manage with a lot of amnesia and a balancing of the competing ideas and feelings from the other souls who reside in my body.

There are souls in my body who feel hopeless, hurt, and angry, and usually deal with those feelings by wanting to commit suicide.

Usually I can help our system of souls through these tough times, but lately it has become increasingly more difficult.

Having had the diagnosis of Dissociative Identity Disorder for 30 years, I have reached a place where the system works pretty well together on most days.

We all seem to have co-consciousness as far as I can tell, and we don’t hate each other as far as I know. I explain it this way because new souls seem to appear often in therapy. In fact, I do not even try to keep track of them, and I don’t mean any disrespect to those souls, but my mind literally cannot remember it all.

As a system, there are some rules that we agree to live by. One of the most important ones is to not kill ourselves because of the damage it would do to our children (or my children, since not everyone claims them).

We also have the rule of not committing adultery since some of us are married. Some souls don’t like this, but they have agreed to it anyway in the spirit of cooperation and living a life with less chaos.

Another rule would be that younger souls, or noticeably different acting/sounding older souls, are not to interact with the outside children in our family as I believe this would cause great harm to my children.

These rules are usually followed fairly well by most everyone in the system. Sometimes a soul might be so upset that they choose to ignore the rule about no suicide or self-harm, but we have systems in place to stop those parts from acting on these feelings, or at least minimizing the expression of them. This is something we routinely have to deal with, and something we stay hyper vigilant about.

In our 20s, we had one soul in our system who decided to quietly kill ourselves. This soul was almost successful, so it is something we are always watching out for, and thankfully, haven’t had a serious attempt since then, though we have had less serious attempts.

My system has been slapped in the face with a lot of new revelations lately, namely, it is becoming crystal clear who our family was, and the awful things they have done to us.

In the past, we have always had these memories, but what is new is the ability to start putting it together in a narrative of our lives, which means a whole lot of grief is staring us down.

Our new narrative is honest, but incredibly painful to face this truth and stay planted on earth.

This new narrative has left souls scrambling to make sense of it all. To hold the truth in our hearts and not die is quite the challenge.

Our system has become quite destabilized. We find ourselves switching from one soul to the next without any control or order to it. Our memory and executive function has dropped to whatever the lowest score would be on that scale. We can barely complete a thought in conversation without switching to another soul and then back.

We have not honored the rule of not switching souls in front of my children. I have put every last piece of energy into trying to stay present for them, but have found myself “waking up” to another soul interacting with my children. This has never happened before.

I find it difficult to complete thoughts I am trying to express, and found myself borrowing the thoughts of other souls to try to complete an idea I was speaking about. This has not worked out very well as most of us are very different from one another, and many inside have some very destructive ways of thinking.

My internal world feels like it is being obliterated, which leaves a dissociative person like myself extremely confused and barely able to function. The neat and orderly walls of our system have been something manageable for the system. But suddenly those walls don’t seem to be there so much.

My therapist pointed out the possibility that the souls within my body may be “transitioning” to a place of more wholeness (or integration), which understandably has left me completely confused and overwhelmed to suddenly be experiencing their thoughts and feelings in no particular orderly process.

I’ll be honest, this last week I have had many moments where I haven’t been coherent in what I was trying to express. I have changed the way I have sounded 5 times in a ten minute period.

In this moment of rest, I would like to be happy about this possibility of integration (yes, we are in the camp who wants it), but we are also in a state of extreme suicidal ideation, planning, and acting out. I am trying my best to stay vigilant, but I also know I don’t have the skills or the strong desire for this vigilance because of the passive influence from the other souls.

I should be in a hospital given the level of chaos and difficulty in me stopping the serious suicidal feelings and plans. I just don’t have the energy or inclination to go to a hospital.

If I go into a hospital for safety, I travel out of state to one of the few places that understands DID. I can’t just go up the road to psych hospitals in my city because they will not believe in my DID, so will more than likely shoot me up with antipsychotics to “fix” me. Not willing to do that.

When I am more of a clear thinking person, I would not risk what I am risking. I keep hoping I will wake up to a better day because I know this won’t last forever. But, I also need to keep in mind the people with DID who successfully kill themselves.

This is an evolving situation. I am hoping things become more manageable again, but not at the expense of possible progress.

I will try to update you again as to where I land next. Stay tuned.

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.

My mother didn’t love me, and today I know that was her fault, not mine

I am at a place in my life when I hear another woman discuss what a wonderful mother she has, I tense up and freeze until the moment passes. My mind and body go blank.

Lately, I have described myself as feeling awkward around these situations. I don’t want to take away from someone else’s joyful relationship with their mother, but I truly cannot relate to it at all.

My mom never loved me. In fact, I think it is fair to say she hated me from the moment I was born.

I spent years and years trying to understand what was wrong with me, or what I could have done differently to have had my mother’s love.

It is so hard to sit with the idea that your own mother doesn’t have an ounce of love for you, and would in fact prefer that you be dead.

My mother loved my two older brothers, which made it even harder for me to process as a child.

On any given day my mother would show her hatred of me through her mean words or her sadistic and narcissistic behavior.

I would try so hard to be small and invisible so as to not provoke her, but it never worked.

She hated every ounce of me since the moment I was born, and maybe before.

I have known for a long time that my mother did not love me, but now I am reaching deep down inside me to face the realities of the pain and problems this has caused me throughout my life.

I struggle with loving and being loved.

It’s like the love switch is just turned off in me. I often feel like a robot, and sometimes when I do attempt love, I can get it very wrong.

As an adult, I do not long for my mother’s love. I gave up on that very early in childhood. I know who my mom is, and I want no love from her.

However, I have learned that the longing for a mother’s love does not go away.

I have tried to replace my mother’s love by unsuccessfully trying to get two different therapists to become my replacement moms. I tried to do this with therapists who have good boundaries, so it was a total flop. Plus, because I never had my mother’s love, I was clueless as to what I even wanted from these replacement moms.

People tell me the secret to recovering from this type of deep maternal wound is to parent yourself.

I still don’t have a clue as to how I would heal myself through parenting myself. I am not actually sure this is a real thing, but I have heard it enough.

For today, I will sit with the fact that my mom did not love me, it was not my fault, and it has caused me great pain and damage.

Tomorrow I will see my mom, and will lack human presence around her. I will probably have a moment of feeling sorry for her and thinking how pathetic she is. I will also feel very stressed as I secretly count the minutes until she is gone from my life again.

Even though I was raised by a horrible mom, I somehow managed to become a distant, but loyal daughter for her.

And by the grace of God, I managed to be a fairly good mom to my children, which is quite miraculous as I only had television to model good parenting for me.

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.