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

DID Posts: Multi-level triggers

What happens when different alters in a system get triggered and start having flashbacks at the same time?

For other people, I don’t know.  Not everyone communicates with all of their alters the way I do.

For me, usually the different triggers happen by age group, time of year, type of anniversaries, and past experiences.

My adult and non-human (aka symbolic) alters tend to get triggered by environmental factors and sensory information most often.  Grounding, DBT, and CBT along with meditation and breathing exercises help them a lot.  So do distractions like cooking, reading, and music/TV/Videos.

My teens get triggered by interpersonal communication and human interaction – harassment/bullies, family, community members, educators.  Movement, meditation, breathing, DBT, affirmations, and distractions help them feel grounded and safe.  So do sensory or cognitive grounding techniques.

My child alters get triggered by life situations that remind them of feeling powerless, unsafe, in an uncertain environment, potential deprivation, and sensory memories (often tactile in our physical body).  Cartoons, cuddling with a stuffed animal, coming out to experience the world in the present, and music are often necessary but not sufficient coping strategies.  They help sometimes, but not enough.

The challenges

All of us struggle with helping our child parts feel safe and grounded when they get triggered.  They don’t always tell the rest of the system when a trigger affects one or more in the system because they’re trying to protect the rest of us.  Or because of shame, fear, lack of trust in the present safe spaces, etc. prevent them from asking for help.

When one or more alters in our system gets triggered, others can get triggered too.  The more alters that get triggered, the more confusing and difficult calming down and utilizing coping strategies becomes.  The internal noise/sensory activity levels rise as more and more alters start to experience flashbacks and heightened anxiety or other emotions.  Distinguishing past from present also becomes difficult.  And increased physical pain distorts everything.

Trusting ourselves, our perspectives, our opinions, etc. when feeling emotional and confused is extremely difficult for all alters, but especially our child alters.  Trying to parent ourselves and comfort/soothe the child and teen alters while also trying to choose and use coping strategies is a big challenge.

Our Solution

Calling a trusted resource and talking through the situation with an objective, compassionate, empathetic third party who can also offer potential coping strategies or solutions through validation of feelings and acceptance.

Friends & family are not good options for us.  For one thing, our family tries to understand but their triggers and personal stuff get in the way.  Plus they can’t always accept or relate to our internal struggle.  It just doesn’t make sense to them because they never experienced what we experienced or have a hard time accepting our experiences as valid and real.  So friends & family are not objective enough to help in this situation.

Our therapist would be able to help, but only in session or in the case of an emergency that made an off-hours call necessary.  But this type of trigger often happens outside of sessions and is not problematic enough to be considered an emergency.  Besides, an emergency situation means a visit to the ER could happen.  We all try to avoid ER visits.

Next on the list is a phone or text crisis line.  I like and often use the Boston Area Rape Crisis Center (BARCC) 24-hour hotline.  It’s anonymous and reliable with a variety of volunteers who offer support in a variety of ways.  They are NOT licensed therapists and do not offer therapy or that kind of advice.  Nor do they offer easy solutions.  What they do offer is validation, compassionate, objective, active listening, and feedback with coping strategies and techniques to help get through the tense moments.

My child and teen alters trust the volunteers to be objective and will accept the reassurance they offer along with coping strategies and help creating safety plans to get through triggering moments.  As they calm down, the sensory overwhelm and confusion in our minds calm down.  Then we all can work together to figure out triggers & grounding or coping strategies to come back to the present.  From there we all can calm down.

Conclusion

With alter personalities, triggers come in many forms and are experienced on many levels.  Our struggle comes from the sensory overload that creates “noise” and confusion to block access to our tool box of coping strategies & techniques.  One trigger with multiple options in the tool box is one situation.  Multiple triggers within the same alter or group of similar alters is another situation.  One trigger for alters of different age groups or experiences creates its own unique situation.  Same for multiple triggers for alters of different age groups or experiences.

How can a system be objective and use both emotion and logic (DBT’s WISE MIND) with so many different “voices” speaking out at the same time?

It’s something we’re working on.  And maybe someday we won’t need an outside party to help find the path that calms everyone down enough to identify triggers and utilize coping strategies.

Thanks for reading.

“Complex Trauma: Understanding and Treatment” — Courage Coaching

Thanks to Athina at Courage Coaching for sharing this video about complex trauma!

Originally posted on A Broken Blue Sky: The following video is one of the best videos I have watched on Complex PTSD. If you suffer from C-PTSD, it will be very emotional to watch. But it will also be very validating of all that you went through and help you to understand your reactions to…

via “Complex Trauma: Understanding and Treatment” — Courage Coaching

DID Post: Sleeping on an Airplane with Alters

Background

Earlier this week (Sunday to Monday), I took a red eye flight across the country to visit family and friends.  When I arrived, I got off the plane and went to work first.  4 days of work and 8 days vacation make sense so I can spend time with both families.  I didn’t anticipate many problems because I usually sleep most of the plane trip.  And I pay extra for the plane upgrades – extra space, early boarding, early advantage for carry on space – and conveniences that make  flying easier.

Main Concerns

  • Panic attack
  • Body memories
  • Physical Pain
  • Digestion/bladder/bowel issues
  • Confusion
  • Dissociation

The biggest Surprise
My alter personalities were restless and active the whole time I slept
What happened:

  • I fell asleep with my sleep headphones and a sleep mask wearing my comfy airplane outfit (knee length dress, head scarf, long sleeve wool cardigan, and sleep socks).
  • My alters came out, and I started switching in my sleep.
  • They started taking over our body and moving me around in the chair.  A Lot.
  • Then they objected to the seat belt and kept sending pain signals to my left side.
  • Later, I had to use the restroom, but they wouldn’t wake up an adult to deal with this.
  • Eventually, I had to get up and move around; used that time to visit the restroom.
  • I offered to buy us a travel blanket so we could curl up and get comfortable without exposing too much skin, but they kept saying “no”.
  • Then our body temp lowered as we relaxed into rest mode.
  • Half way through the flight, I gave up trying to sleep and just listened to music or TV instead.

The Challenge of Restless Alters on a Plane:

  • Disturbing my neighbors while they slept
  • Feeling shame and over apologizing to my seat mates
  • Anxiety over how I appear to the flight attendants and other passengers
  • The discomfort and pain of sitting in one position so long without any of the meditation techniques working to relieve the pain

The Second Biggest Surprise
Riding the bus from the airport to the office.

What Happened:

  • The bus was crowded so I had to stand in an awkward position
  • At the stop after mine, an older woman came on the bus and kept staring at or through me
  • The bus driver had to get off for about 10 minutes at the third stop; we didn’t know if he would come back or not
  • While the driver was off, the woman kept looking at me as if it was my fault.  I kept looking her in the eye, shrugging, and then looking away
  • Then an Asian girl got on the bus.  And the woman started talking to the other passengers in a strong local accent
  • The accent triggered me and made me feel so nauseous I got off early
  • The next bus was almost empty, but I ended up at work later than I wanted
  • The nausea didn’t go away until I used pressure points on my wrists; then kept coming back throughout the day

Rest of the Challenges

  • I lost my liquid items and toothpaste out of anxiety and stress
  • (forgot to take them out of my bag and then put them in again after my bag went through the machine again)
  • In Chinatown, people were extremely rude because my bald scalp showed through my head scarf
  • At lunch, I had to interact with people who were not exactly nice to me before I left
  • By lunch I was feel jet-lag and started crying in the bathroom from overwhelming feelings (good and bad)

Coping Strategies

  • Focusing on the positive
  • Acknowledging the potential triggers & negative feelings; then letting them go
  • Using grounding techniques
  • Allowing myself to feel everything
  • Giving and receiving lots of hugs
  • Getting my work done
  • Keeping in touch with my relatives
  • Asking for a ride home instead of using public transportation
  • Getting a good night’s sleep

Next on the list to research

  • Strategies for stretching and relaxing on a long flight
  • Strategies for helping my alters calm down during sleep
  • Strategies for dealing with the shame that comes from too much activity that disturbs my seat neighbors

Thanks for reading