DID Post: Sometimes it’s okay to be an uptight (insert word) clinging to structure

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Background

This week, especially, had all parts of me reflecting on the so-called rigidity and busyness of my life right now. Starting something new often brings up boatloads (and I mean cruise ship or air carrier sized) triggers and flashbacks. Enough that I used to get discouraged from trying something new or beginning a project outside of my comfort zone.

Uptight, Rigid, or Something Else?

Something I am often accused of (in my personal life more than professional these days) is being a rigid, uptight, type-A personality, stick-in-the-mud whose life is too regimented to ever be fun. 

My face often lacks the appropriate facial expressions to show others I am enjoying myself, etc. Body language is the same way.

What these people don’t (or maybe can’t/refuse to) understand is that I relax when I feel safe and comfortable. 

The less safe or comfortable I feel, the more tense and rigid my exterior self appears to people.

Structure, DID, and Meeting Basic Needs (aka functioning)

During the years when I would lose time or forget as part of my traumatic amnesia, an ingrained routine was all that kept me functioning moment to moment and day to day.

I might not wake up knowing where I was. Lunch time could turn into an adventure that left me on the other side of town in an unknown to me neighborhood and no public transportation. After work, I might get on the same commuter train as always (time and berth are correct) and end up in another city all together. Mirrors used to piss me off because I never recognized the face or body reflected back at me.

And those are some of the big items that get attention. Smaller stuff like walking into walls and furniture, forgetting a process for work, not being able to learn a dance routine or martial arts technique, were less obvious items affected by DID and traumatic amnesia while also more embarrassing. Adults often chastised me for being inattentive, forgetful, etc. because I was so “book smart” and yet so uncoordinated within my body. Peers used that as yet another excuse to bully and make fun of me when I lived as a “normal” little girl in public school or among blood family.

But that same structure allowed me to live both lives without mixing them up often. Punishment for mixing up my two lives included a lot of pain and sensory overload. When those triggers visit, all I remember is unbearable noise followed by feeling sensations of extreme pain throughout my head and body.

And so, even when I lose a weekend or wake up not remembering what happened for weeks at a time, the structured survival routine embedded in my muscle memory ensures that I and my alter personalities remember to meet our basic needs until awareness and memory comes back. Even for small things like:

  • staring at a computer at work, getting triggered into a dissociative or alter personality switch for seconds or minutes, and coming back not remembering what happened in all that time. But the screen looks different and a quality check of my work shows errors I wouldn’t normally make…

And as I experience the pain again, I think to myself “well yes it hurts, but I’m still here. Alive, present, happy, busy doing what I enjoy.”

Conclusion

My life is not “typical” in any way, but it works for me. I get 99% of my work and personal stuff accomplished from within the relative safety of my apartment. Work is balanced with “fun-to-me” activities and hobbies. Communication with the outside world is often limited to email and phone or video chat, but that feels safe and comfortable.

I don’t feel busy, but people who hear about what’s going on right now often tell me I am exactly that. But maybe it doesn’t feel busy or negatively stressful because I chose each activity and feel joy working on each task?

And these activities are not substitutes for a “more active social life” either. They are how I like to fill my time and enjoy life. Socializing, for me, is a big trigger. When I need person-to-person contact, I check mail at the UPS store, go for a walk outside, get on public transit, or visit a store full of people. Maybe a restaurant or a park instead.

You might be wondering about these “activities”, so here is a short list not in any specific order:

  • my day job with opportunities to learn new skills and utilize my existing ones in creative ways (aka job 1)
  • aromatherapy, herbalism, incense, etc. certification or continuing education classes to develop a new business venture (aka job 2)
  • this website and blog (aka job 3)
  • my plants – talking to them, dancing with them, learning to enjoy having roommates again
  • cooking – my memories are finally coming back so I feel more comfortable and confident here
  • reading books, listening to music, or watching a funny movie
  • bath time – never again will I compromise on renting an apartment without a bath tub. A good soak with epsom salt or essential oil based soap works wonders for self care and relaxing

So my questions to you are:

  • how does structure (or lack of it) impact your life?
  • what activities, work, or hobbies bring you joy and fulfillment?
  • if you had a choice, would you include more joyful activities even though they will or could cause pain from triggers and flashbacks?

Thanks for reading

Coping Strategy: EMDR Trial 2

Credit to: Lutheran Family Services of Nebraska

*Disclaimer: I am not a medical or mental health professional. The information below is for educational and support purposes only. Please discuss any changes you want to make with your provider first.*

BACKGROUND

In past posts, either my alters or I mentioned trying EMDR with different counselors. The results were good in session, but not so great between sessions or in real life. The coping strategies we practiced to help with the side effects of EMDR were sufficient but not enough to quote a past counselor. I couldn’t cope with the side effects of EMDR while living my old life, so put it aside to focus on techniques and strategies that did help.

EMDR (Eye Movement Desensitization and Reprocessing)

So what is EMDR? And why is it helpful (depending on the individual) for PTSD, Trauma, and Anxiety?

You can find an excellent definition and resources here at the EMDR Therapy website

This article defines EMDR

This website is for the EMDR International Association and offers training, education, and resources.

Q&A

Why try EMDR again after so many years?

Short answer:

Different counselor, different approach, different overall living situation

Longer answer:

  • My memories were coming back, and the emotions/sensations/triggers that came with them started interrupted daily life or nightly sleep too often
  • The hyper-vigilance and panic attacks kept increasing because of new or more sensitive environmental and internal triggers
  • Increased sensitivity to internal triggers – existing coping strategies and techniques were less helpful than usual; sometimes  made the overwhelming feelings or anxiety worse
  • My current counselor asked me if I was willing to try EMDR again and explained her process. Then showed me different options to use for the bi-lateral stimulation part of the process.
  • Overall, I felt safe, confident, and ready  to try this again

How did the EMDR work this time around?

The EMDR worked well and helped a lot to reduce my sensitivity to certain triggers and feel more confident about my reactions to situations in real life. The memories are just memories now. Any lingering trauma sensations or triggers left with each EMDR session.

Each Session?

Yes, I have had two sessions so far: one earlier this summer and one in October.

Why wait to share?

As mentioned earlier in the post, there are side effects or after effects that linger for a period of time after the EMDR session. The time period for long those effects last differs from person to person.

For me, the effects last about 2-3 months. During this time period, my focus is narrowed to: meet basic needs and self-care as I work with or through the emotional and physical changes brought out by the EMDR.

Will you share tips and suggestions for preparing for an EMDR session?

Yes. I broke the list down into three sections.

Discussing with or finding an experienced counselor

  • Learn as much as you can about EMDR and how it could benefit you because it does not help everyone
  • If you are seeing a counselor, have a conversation about how EMDR could help you
  • If your counselor is trained in EMDR, ask if you can try it in a future session
  • If your counselor is not trained and you want to try EMDR, ask for a referral to work with an EMDR specialist along with regular sessions
  • If you do decide to work with a specialist, make sure you feel safe and comfortable with her or him before you start anything.

*remember it’s important to trust the counselor and feel safe sharing these experiences in order for any kind of therapy or coping technique to be effective*

Before the EMDR session

  • Listen to the counselor’s process: intake questions, building resources, practicing coping strategies so that you remember them even in distress, discussing memories and choosing which one to work on in each session, etc.
  • Work with the counselor to answer questions as honestly as possible; provide enough information to help you both make informed decisions about the session and after care
  • If a coping strategy does not work for you, say so and work with the counselor to find an alternative
  • The counselor may ask you what type of EMDR tool you want to use for the bi-lateral stimulation part. The choice is yours, and it’s okay to ask if you can try out each one before making your choice

After the EMDR session

  • You will feel tired after your session, so it’s best to try scheduling your session after work or on a day with minimal activity
  • You may experience emotions and sensations differently – that makes coping with and reacting to them difficult sometimes
  • Your body may feel different – especially if you experience body memories
  • You could have more memories resurface – not all traumatic – and have to cope with them too
  • If you are like me (aka open about your unique gifts), you might also have some interesting experiences within your environment or during interactions with people. Traditional coping strategies might not work for those experiences, but your spiritual or religious practice could help. My spiritual practice helps me cope with them

Remember, EMDR is not for everyone. These tips are for informational purposes only and based solely on my personal experience. Please discuss with a medical or mental health professional before making any decisions or changes to your current treatment plan.

Thanks for reading.

DID Post: Follow Up of Last Week’s Coping Strategies

Catching Up

Last Sunday, I couldn’t post because all parts of me got hit with intense body memories and flashbacks.

Literally, the monsters in my mind tried to take over by staging a coup. The traumatized parts of my alters got triggered and sent mixed signals to my brain. It felt like getting sick with a cold and the flu at the same time all over again. Plus, I still had to work and finish tasks before my vacation last week.

Types of Change in My Life

There are times when change happens so fast, a person is left flailing around unable to keep up with it all.

There are times when change happens, and the individual has enough awareness to fight it, roll with it, or try something else. Either way, the change(s) does not overwhelm the individual.

Then comes the slow change  that silently creeps up on a person, the kind that goes unnoticed until something happens to make it obvious. Kind of like an “I should have known that would happen” situation.

A Quick Detour to Explain Hallucinations vs Intuitive Communications

Option 3 is what happened to me two weeks ago. Unlike a lot of people I talk to about PTSD, I am completely aware of my hallucinations as they occur. I can tell the differences between them and reality in the present moment. My hallucinations are obvious to me because they are consistent in their appearance – hearing voices, seeing exaggerated and transparent forms of beings/cartoons/creatures (aka ghosts), and feeling certain body sensations – and different from the sensations and vibrations my plants use to communicate with me.

Sometimes I still get confused when my empathic senses or intuition tries to share information. But that is a case of “am I hallucinating or is my intuition talking to me?” Working with my spiritual mentor has helped me a lot with that question. I feel a lot more confidence sorting through the different sensations and information that triggers my hyper-vigilance and body memories.

Back to Last Weekend

It started on Wednesday when I woke up feeling sick and had to take a “sick day” from work. My nightmares were getting worse and bleeding into day dreams that distracted me from…well everything. I started wanting to be awake all night and sleep all day. While I was awake, the voices kept up a steady stream of shaming insults about anything and everything.

I was tired, distracted, confused, and congested with a lingering head cold. All that increased my palpitations (side effect of high anxiety levels) and made breathing difficult. The high anxiety made tense head and neck muscles tighten even more. No matter what, I just couldn’t get comfortable. So I slept as best as possible and drank lots of tea. Distracted myself with podcasts about essential oils, aromatherapy, and herbalism. Focused on trying to figure out why the pain increased no matter what coping strategy I tried.

Then it hit me. Maybe one or two weeks before, while shopping for holiday gifts at my favorite store, I ran into a different spiritual teacher. We talked, and she suggested that maybe part of my anxiety came from holding on to the past without realizing it…that maybe I (or parts of me) was projecting my hopes and dreams onto others and forging connections the rest of me didn’t want. It could be that my alters were growing, changing, and afraid to let go of the familiar.

That made a lot of sense. Headaches and pain that won’t go away no matter what I try usually means some kind of internal conflict.

I haven’t used the phrase “monsters in my mind” in a while, so let me explain. I and every one of my alter personalities experienced severe trauma of some kind. We all hold the memories in different ways (mental/emotional/spiritual) and in different parts of our physical body. The memories are attached to the “other stuff” (emotions / thoughts / behaviors / actions / reactions) we experienced and couldn’t process back then.

Our memories are neutral. The “other stuff” is what creates the monsters in our mind – the voices telling us how awful we are and that we are worthless, etc. Essentially, I and my alters are fighting ourselves when this happens – hence the term internal conflict. Sometimes a call to the hotline helps; the volunteers listen objectively and can help sort through the confusion. Other times, though, only meditation can help.

By meditation, I mean lying down someplace warm and safe (usually my bed), closing my eyes, and letting all parts of me out to communicate at the same time. We do a roll call to make sure all 88 are present. if anyone is missing, we go looking for them. We protect each other from the monster traps and any other potential problems that come with high anxiety and flashbacks.

On the outside, our body looks like it’s sleeping. Sometimes sleep talking and sleep laughing occur too. Our body might move on the bed, roll around or change positions, but it does not get up and move around. That kind of vertical movement is too dangerous. On the inside, though, all of us are aware of the different body sensations moving through our physical form as we check our internal home and its safeguards.

The safeguards are boundaries that protect our inside home and its safe spaces from the monsters. This worked well in the past because many of the triggers that caused these kinds of panic attacks and flashbacks came from outside of our body/mind self. We could retreat inside and do what was necessary to keep the monsters from invading and taking over.

This time, though, our safeguards were intact. The monsters were inside the safeguards and causing havoc.

How did they get in? They were already inside. These monsters were the hallucinations body memories given form as we alters learned to cope with and let go of our past. And the monsters wanted to leave just as much as we wanted them to go. But no one knew how to get them out.

A meditation that combined 2-3 different practices.

  • LovingKindness or Compassion: all parts of me opened up our home and safe spaces to everyone – especially the “monsters” and “outcasts” – with open minds and open hearts – kindness, compassion, acceptance, and unconditional love
  • Mara – in the Tibetan Buddhist tradition: They could stay and be part of the community for as long as they wished as long as they followed our rules. If at any time they wanted to leave,  the could do so knowing that leaving was permanent.
  • Visualization – The monsters liked to talk, so once one said “I want to leave” or something similar, a rainbow portal appeared – sometimes in front / side/ back, sometimes above, sometimes below the monster. Then the monster – who was decidedly not an alter personality – stepped through the one-way portal to go home.

Imagination and a love of fantasy combined with a belief in magic, miracles, and the paranormal helped all parts of me design this meditation.

Since all 88 alter personalities changed and had monsters ready to leave, the meditation took a long time. It started on Friday after work and continued through Sunday. There were times of actual rest and pause for food/drink, etc. throughout the weekend. But most of it was spent lying down in meditation.

One week has passed since that big self-care weekend, but I still get requests for portals.

And yes, if at any time one or more alter personalities decided to leave our system, I would open a portal for that personality. Before he/she/it left, I’d give a big hug and say good-bye. Then probably cry for a bit at losing part of myself. But I’d let that part go because trying force something to stay against its will goes against my values.

Yes, I am afraid that will happen some day. But if it does happen, there will be an excellent reason.

Until then, all parts of me continue to work on recovery together.

Thanks for reading.

DID Posts: Seasonal memory loss started again…

I haven’t written a post about DID in a while. It’s so much a part of me and my chosen lifestyle that I forget how much of a struggle it was to get here sometimes.

Every year something unique happens in my life. It can start any time between the first day of school and Halloween.  It ends some time between March and May the next year. Average length of time is six months.

During this time period, my symptoms increase to an overwhelming level; my body memories activate and never stop or slow down; and all of my  typical patterns (sleep, exercise, eating/hydrating habits, work) change.

It starts with a feeling of sadness that permeates all parts of my consciousness. The sadness is followed by hyper-vigilance, paranoia, and lethargy.  I stop sleeping. I dissociate more often.  My hunger decreases, and I’m tired all the time. Everything feels like a challenge.  Nothing brings joy. Staying at home feels safe.

Time slows down or speeds up without my realizing it. I feel like I am moving through a fog. Fear makes fun activities like cooking and going out too scary to contemplate. Lack of appetite = weight loss = more body memories and body-related symptoms.

Worst of all, I start forgetting every day things and not recognizing my surroundings.

How do I know this happens? Why can I describe it so well?

The awareness started after I got a real job that required me to remember routines and processes, so probably 2006/2007. Shortly after I walked away from my family, I experimented with self-training a service animal to help with the PTSD. While that story is for another post (maybe), the whole experience brought the lost time issue into present reality.

It started in August with meeting, hiring, and learning basic dog care and dog information from a professional dog trainer. By October, I had a puppy and was working with him and  the trainer through a 4-level dog training program. One Saturday in February, I woke up and couldn’t remember any of the training exercises and activities we had been working on since October.

Luckily, I did remember having a dog and how to take care of him. Reflecting on that experience, though, showed me a similar pattern of remembering and forgetting that spanned decades. My counselor at the time was not surprised when I shared this with her in session. She explained to me that many people with Dissociative Identity Disorder (DID) have such experiences.

A full switch (my term, not  the professional one) between alter personalities means a full consciousness switch – as in one personality leaves or goes dormant while the other takes over completely – and whoever is in charge retains the memories of those experiences. Alter personalities in a non-integrated system often are not aware of each other and do not communicate or share memories if  they are aware of each other.

close up of pictures
Photo by Leah Kelley on Pexels.com

My counselor reassured me that the memories weren’t lost or stolen. Instead, they were stored someplace in my mind that the present me (or me in charge) couldn’t access.  If and when I did need that information, it would become available. By this time, we had been working together for almost two years. She was familiar with my patterns of increased and decreased symptoms, triggers, etc. more than I was.

When my counselor realized how much  this bothered me, she offered to help me create a plan to minimize the negative effects of my seasonal memory loss. The first (and most effective to me) was focusing on Internal Family Systems therapy to foster communication within my alter personality system.

The coping strategies and techniques I have discussed in the past are all part of this plans so I’m not going to describe them again here.

Who is in charge? And what will I remember next May?

Back then, it was me or Pip or a combination of our four dominant personalities in charge unless something triggered one of the others into taking over. I  didn’t know about my two simultaneous lives, so couldn’t factor that into the equation. But that mattered less because the memories still disappeared and often didn’t come back again for years.

These days, we all work together and are all “in charge”.  Sounds weird, but that is the truth. Each personality or part of me has a specific set of tasks to do in order to keep our system running smoothly. We have others trained to perform multiple tasks or act as back up if someone isn’t feeling well or needs extra help, but all of us are needed if we want to be at our best.

So what will I remember? I honestly don’t know. And at this point in my life, I am not sure if I would want to know. One of the best lessons therapy taught me was that I don’t have to remember everything that happened. And I will remember what I do need to remember at the exact time that information is required to help us:

  • achieve a goal
  • maintain safety
  • not make the same mistake again
  • something else I can’t describe with words

Conclusion

While memory loss is scary and often feels uncomfortable, I can now accept it as another part of my life. Sure, I miss being able to remember everything and sometimes mourn the loss of those memories. But at the same time, I trust all parts of me to find and share memories, skills, and experiences as we want or need them to thrive in our present life.

Thanks for reading

DID Posts: My Beef with how TV portrays people with DID

This is one time when I wish I had already upgraded my WordPress membership to a Premium account.  Then I’d be able to link to YouTube videos too.  But, the alters really want to get this post out now, so here goes…

TV as a distraction & affirmation of Good winning over Evil most of the time

I admit it.  I love watching certain procedurals and investigative TV shows.  They remind me that the justice system really does work more often than not, and that some police and/or law enforcement are trustworthy.

What I am not comfortable with is how many of these shows portray people with DID as serial killers, murderers, victims of their mental illness, or violent criminals while not portraying how they could also be victims of crime, witnesses, or minor suspects who end up helping solve the case instead.

So why discuss this now?

Because we’ve been binge watching/listening to Criminal Minds Seasons 1-12 and watching episodes of Hawaii 5-0 as background noise to distract from a noisy neighbor.  In Hawaii 5-0 only one alter in the system was a murderer.  But the way the psychologist described how the different alters appear to people seemed off.  Not all of hosts are submissive or appear submissive.  Not all of the protectors are violent or take on the worst characteristics of their abusers.  And I’m not sure that in every case of DID, the host is not responsible for what the other alters say or do.

And generalizing like that could cause more damage to how people with DID are treated in the outside world than anyone realizes.  As for Criminal Minds, the diagnosis is used as information in the profiles with respect and sensitivity, but most of the characters with DID end up being murderous or some other type of dangerous criminal/victim.

What We All Wish for

That these procedural shows and others treat DID and other so-called trauma-based mental illnesses with the respect, acceptance, and sensitivity NICS has done with PTSD and PTS for civilians, active duty military, and veterans on its show.  Not that NCIS is perfect because it’s not.  But many of the recent episodes dealing with trauma and trauma-related issues have been treated with care instead of being disregarded or looked down on or considered unreliable witnesses, etc.

On the Other Hand….

We are all grateful that shows like these are addressing issues of trauma, anxiety disorders, and other issues that usually get brushed off in mainstream television.  In spite of some errors or (in my opinion) erroneous generalizations, these shows also portray main characters with abusive or traumatic incidents in their pasts as admirable, compassionate, strong, ethical, successful individuals at work, in intimate relationships, and with family.

Final Thoughts

While I am upset about how people with DID get characterized in many of these shows, I am grateful that people are interested enough in learning about the disorder to use it as part of their episode plots.

Darkness and Silence really wish we could upgrade sooner instead of later because then they can FINALLY write their post about SSA Derek Morgan on Criminal Minds.  For any male survivors of sexual assault/abuse, you might want to look up his story line and watch Season 8, Episode 18 in particular.

Thanks for reading