I felt this photo spoke clearest to my soul about this topic today. The daily journey with Complex-PTSD (C-PTSD).
Before you dive into this post, let me make one thing as clear as I can. These are my experiences, and mine alone. This is a day in my head. No two of us with C-PTSD will experience anything I discuss in the exact same fashion. That is the greatest fallacy and mistake of the medical community, assuming this is cookie-cutter diagnostics and resolutions. It isn’t. Every person is entirely unique, both in experience and severity of illness than the person standing beside them. With that front of mind, let’s begin.
What led up to my eventual diagnosis of C-PTSD is a topic for another time and another day. Eventually I will stop discussing the causes entirely, as a friend stated, it’s like ripping off scabs in front of people every time you dig up your past. Let’s not do that here and now.
For years, the various aspects of my personal type of PTSD/C-PTSD had been treated as separate issues. Anxiety… like running at your highest setting non-stop 24 hours a day. Without warning, something can trigger it, and then we’re off on a roller coaster for a while, and it is not a fun ride, I can tell you. When it gets bad enough, it will trigger a panic attack, and if I cannot manage my way through that, then inevitably a trip to the emergency room is likely, which, of course, only drives the anxiety levels higher. The one trick I was taught by someone with a similar issue, was that you are gulping and gasping air at the onset, but you don’t remember to exhale. Because your lungs are at capacity, it drives the panic higher because you think you cannot breathe. While true, the thing you need more than anything in that moment is somebody to remind you to EXHALE. And I did once have a panic attack severe enough to trigger a minor heart attack. Not at all fun.
Depression. The darkness descending. Comes on without warning, that general feeling of hopelessness, that there is nothing you can do to improve your situation, it will only get worse, there is no future. Days on end spent in self-isolation, barely able to function. Getting out of bed to go to the bathroom takes a concerted effort. You celebrate the little things, like taking a shower, making coffee, moving around the apartment. My doctor had set up a scale with me, 10 being the happiest you have ever been, things are sunny and bright and birds are singing in the trees, and 0 being you have an exit plan, you have the means, and you are ready to act. When depression sets it, it will drive me down to about 4 usually, sometimes 3 or 2 when really bad. Those are the times, that, as much as I do not want to, I know that I have to be in communication with someone close to me. Even if it means meeting up and going out for a coffee, I need that person to keep it from going lower. On the advice of a friend, I set up a “Living Pact” with those closest to me. The very basic idea is, in times of crisis, I communicate with one of those people, and we need to meet in person quickly. There are multiple people on the list, I’m still adding folks to it. And, should an attempt be made, they have full permission to raise hell and kick ass as required for not living up to the terms of the pact. Seems odd to some, but, it is a comfort knowing there are the people on that list who will provide support, even if it means taking me to hospital for my own safety. I may never need to put it in action, but it is there anyway. And before you ask, I have two previous suicide attempts.
Other physical issues come up, such as Irritable Bowel Syndrome, Dissociation or Depersonalization, and others. It can manifest itself in a number of ways. As much as you control your diet, IBS can still hit and last for days on end. I don’t think I need to detail that, you get the idea. Dissociation, a detachment from yourself at times of high stress or anxiety/depression. It was only through therapy that the occasions when this happened could be detailed. Explained much. When under extreme threat, I have in the past dissociated, and an “alter” (other identity) has stepped to the forefront for protection when needed. It takes a pretty extreme occurrence to trigger it, there are friends who have multiple alters who “take control” when needed. Depersonalization occurs when, as I’m told, you are literally out of touch with your physical body. You can see things happening, but are not really there to deal with it. You could be looking at your own image in the mirror, and not see yourself there, the person looking back is a total stranger.
Now, treated separately, throughout the years, nothing was really successful by any measure. When things began to come in line was after the initial diagnosis of PTSD, and through further work, an update to Complex PTSD (C-PTSD, sometimes referred to as Compound PTSD). Treating the major cause of all the associated mental illnesses was what started to show progress. There is still a great deal of work to be done, and once the therapist I had been dealing with retired from her practice, it’s now a matter of finding someone new and starting over again. Such is the state of things these days.
What’s a typical day like?
One thing is being hyper vigilant ALL THE TIME. By the end of the typical day, my neck is stiff and sore, same for shoulders and across collar bones. Because of the hyper vigilance you are always ready to react the second something happens. You expect it, even when you are in a totally safe space. Literally the only time I can let my guard down is when I am with someone I trust completely, like Danielle, Ashley, Barb, and a few others. With the hyper vigilance is an extreme startle response. For example, a meeting room we use fairly regularly at headquarters has a door closer on the door that needs to be adjusted. During a meeting if someone gets up to go to the bathroom or steps into the hall to take a phone call or have a conversation, that door slams with a hell of a bang. No matter what I try, I physically flinch every damn time. I can see it coming, I’m white-knuckling my chair, and when it bangs, I react. Same thing at home when the roommate lets a door slam or close hard. Without fail, I literally jump. As much as I try to conceal it with various tricks, I just can’t. One meeting there was a lot of in and out movement, somebody else at the table who, I suspected, had similar anxiety issues would hold the door until it closed softly every time. Finally, after it happened enough times and I was starting to literally shut down where I sat, Barb reached over and put her hand on my arm. Amazing, the flinch didn’t happen the next time. Just needed that safety blanket, so to speak, to hold things in check.
It happens at home, after a shooting on the street across from me on the weekend, every time I hear a siren, I have to stop what I’m doing to look out the window. I can literally tell you what type of vehicle is in motion by the sound/notes of their siren, each service, Fire, EMS, Police having a distinct sound. It’s the same thing when somebody approaches me from behind, out of my line of sight. Friends have observed this happen on multiple occasions. If a woman approaches, I will hear her voice, and she can put a hand on my back or shoulder and I just glance around briefly to give a smile. Now, same situation, with a male approaching, I am told I will shrink from them or flinch noticeably. It goes back to the causes of C-PTSD, which we will discuss another time. I’m sure one day I will pick up some new technique to control it, for now, I live with it.
Crowded spaces are hell on earth. There are days and situations that I can handle without a blink of an eye, and there are others where I am constantly scanning the room or location for the easiest exit, because at some point I know I am going to make a beeline for a door to get outside. If the room is too loud and I cannot easily decipher voices, I literally shut down. I am looking off in the distance, even with my hearing aids in, being unable to hear conversation clearly throws me off completely. I am lucky that when I have to be in these spaces, I’m with somebody I trust implicitly. They are familiar with my facial expressions. I think I have a blank look, but they know exactly what’s going on inside. People talk about the fight or flight reflex in relation to anxiety. In reality, current thinking shows it is three levels – fight, flight, freeze. Here’s how it occurs for me: Fight – likely snap a comment or something bordering on sarcastic; Flight – find the nearest way out and take it; Freeze – do a complete shut down in place and become unresponsive, usually looking down or my hands are fidgeting like no tomorrow, particularly if I have something from my purse handle like my key ring, if not that, and I have a ring on, I will spin that ring without stop. Always a good sign to take me out of where we are. And yet, how do I manage to do what I do when out delivering a seminar, talk, speech, guest lecture? Because my safe person is typically there. I know I can do the usual scab ripping reveal of everything up to current day, because my best friend Danielle is within arm’s reach or my line of sight all the time. It’s why I will typically show up at a venue an hour or more in advance, so that I can walk through everything, make note of bathrooms, coffee shop, most direct route out of the building, etc. My sister Nat was coming to speak with us at one of our guest lectures this past Spring, and I walked out her route from lecture hall to bookstore (she had a book signing that evening), where she could go to meditate in peace, where she could go for water, or to get outside air quickly. Same things I do for myself at each place. In a lecture hall, the professor is a dear friend, so I have a second safe person. If my bestie Ashley is present, she’s where I will look when I need to rebalance after discussing a tough portion of history, I know if I look in her direction, there is my place to quickly recharge and carry on. It has happened that I will just stop talking mid-sentence. For some reason, my mind has wandered off to do other things. More than once, I’ve had to turn to someone and ask them what was the last sentence I said so I can find my way back to where I had been speaking. That is a major frustration.
Some may think I am a totally icy bitch, always keeping people at arm’s length. It’s one of my ways of protection. Over the years I have built walls, fences, gates, higher walls and fences… it’s my safe little garden in my mind, where I am free to be myself without worry. Far too many times over the years, I have let my guard down, and allowed some person to get close. The majority have not ended well. I can sit for hours and re-examine a loop of things I wish I had done differently, why did I let that person get close, see, it never ends well, you should never let people get close, you end up destroyed or heartbroken every single time. Or worse, come across some narcissist who will cause no end of problems and then subject you to endless amounts of gaslighting. I’ve dealt with that in recent years… why at times I will self-isolate for my own safety. My sense of humour is also a way of keeping people at arm’s length. I’ll keep you laughing, but I’m not letting my guard down, I just can’t right away. Been burned too many times. My “rough as a badger’s arse” persona and the C.B.S. character (Classy, Brassy, and Sassy) are my ways of coping. People think they are getting to see all of the real me. No. They see what I allow to be seen. I can count on my hands the number of people who have seen me without my walls and guards, the raw version of Christine, and even then, I will struggle to keep my walls up, to not show emotion, to not melt down in front of them, until the dam bursts and everything comes spilling out. Losing control and getting into a crying fit in public simply makes me want to crawl under a rock.
And then, inevitably, the nightmares and night terrors. Reliving the past traumas on a vicious loop some nights when my eyes are closed. If I am not stirring to a level of being awake and alert, I will start grinding my teeth. Apparently at quite a volume too. My former girlfriend was a nurse, she knew just the right way to cause me to come to enough to stop the grinding and to be able to drop back to sleep without going right back to where I was. Yes, I am not an easy person to love or sleep with, and yet we were together for the better part of a year. She was always amazed at the level of tension in my neck and shoulders at the end of a typical day, it would take some work to relax that (then I could return the favour!). Look, it’s a conversation that is necessary, if someone shows an interest, they need to know exactly what they are getting themselves into. This is no picnic, if you’re not ready to hold my hand and take the journey with me, run for the exit now, because I will lay all the cards on the table so that there are no surprises in future.
And throw in being an Empath. Imagine being like an antenna for all the energy occurring around you. You feel all of it. It’s why narcissists tend to find us, we are, at times, easily managed through their standard gaslighting techniques. It is why some of us will disappear from social media for an extended break, why we drop out of public view in our neighbourhoods, why we cancel appointments, engagements, social functions. We are so drained of every last bit of our energy that we need to go away in solitude and recharge. We cannot advocate for others if we have no energy left for our own self-care.
And there are days I crave the touch of another person. As much as I cannot stand someone coming up behind me, those friends I love, the people I care for, the ones I know well… nothing is so appreciated as a thoroughly cuddly hug. I have a few friends who just automatically will take me by the hand when we are out walking. I literally walk on air when they do. There’s nothing like sitting in a quiet little corner of a coffee shop and having a conversation about nothing in particular or getting caught up on the personal details of each other’s lives. The dating thing? There are valid reasons why I had been single for close to 30 years before meeting my ex last year. Am I in any rush to jump back in the pool? Not particularly, it would be nice, but it is a rare person who could deal with what I live with in my mind every day. But, a quiet little house tucked in some remote spot would be a dream come true. I haven’t closed the door on that completely, but pretty darn close to it. We’ll see, maybe at some point down the road, but I can honestly say, I am most definitely not most people’s cup of tea.
I may be too quiet for some, but never mistake my silence for consent or for weakness. If I need to, you will know quite clearly what my thoughts are. But there are times that I am enjoying a moment of silence, both externally and inside my mind. And keep this in mind, even with balancing all of this on a daily basis, I still carry on with my advocacy work (I retired from activism a few years ago), go to meetings, get involved in matters important to my community, and want to stretch to take on new challenges on a regular basis (if I can, 2018 will be quite the year of firsts!!).
And as always, I wish there was not a need to write this, but, as I know from my own experience, somewhere out there, someone will read it and think, Hey, I’m not the only one, maybe I should go and get help.
Live on kittens, stay safe, City Mom is always ready with a hug when it hurts.
We will talk again soon, I promise.