Personal Experience: C-PTSD

I wanna talk about a series of issues/symptoms that can arise from C-PTSD, at least how I’ve experienced it. Essentially, childhood surgeries, assaults, etc. that I don’t feel like mentioning. It’s hard to articulate as it’s really all connected so sorry if this feels disjointed or confusing. 

When I was 15, I stopped sleeping entirely, only sleeping when my body would crash (usually for no longer than an hour and in classes). It was an escape method I admit but I didn’t choose it. Figured the traumatizing stuff couldn’t affect me if I wasn’t awake to experience it (what a mistake that was, esp considering the surgery issue). Over several years have passed and it’s worse. I get so worked up when set off sometimes that I stay awake up to 72 hours, just trying to handle the buzzing and constantly looking over my shoulder. I now have hypersomnia, usually showing itself after intense sleep deprivation. We’ve discovered that when I’m set off, I just can’t stop going no matter how exhausted I am. Occasionally, I can’t stay awake longer than 6 hours. It really depends on what sets me off that time. We’ve collectively agreed that there’s nothing really to be done about it at this point (if something was going to work, it would’ve by now) so I don’t really expect to hold a job again. My nightmares are usually pretty bad and I’ve more than a few times slammed my partner into a wall in my sleep. We both have PTSD so things admittedly get difficult. One wrong move, either of us are gonna be messed up for a bit. Lovely guilt issues too since neither of us have great memory.

I found myself, during the last few years, hiding in the garage habitually to avoid noises in the home, drinking and smoking for hours. Or I found people willing to get plastered with me in places I could control so I wouldn’t have to think about what I was feeling. Honestly it felt like I was going to shatter if someone so much as looked at me wrong. 

The thing is, I got to this point of self-medication because of medical trauma. I can’t walk into a medical building, especially if it has that smell, without panicking. I got asked to do a rather invasive test recently and I burst into tears and cold sweats, scratching my arms as hard as I could. Didn’t do it. I still get calls about a blood test I was asked to do in 2013. I see blood donation signs, the little bandages, and it takes everything I’ve got not to vomit. I really really detest blood drives.  Eventually, I got fed up trying to fight doctors about specific treatments. They found me difficult to work with because I have a tendency to vanish if asked to do anything invasive or needle based. Everyone around me treats me like I’m being childish.

So I smoke and I drink. Keeps the nerves at bay, allows me (somewhat) to sleep. Also manages to keep the rage outbursts I’m prone to tightly locked up. At this point, I’m well aware where it’s coming from and what I need to do with it, it is just a matter of actually feeling it. And not exercising it away, which was my childhood coping mechanism. I recently moved into my own place so things aren’t as bad now. A solid chunk of triggers are gone simply by changing environment and people in my living space. I still heavily smoke but drinking I’ve lessened for my own good.  I never wanted to be like this but if it keeps the pain out of my arm and it can turn off that constant over-analyzing and hypervigilance, then I’m gonna do it. Admittedly, I’ve only been aware of my trauma for about 3 years so I’m having quite the delayed response to it. I like to think I’m starting to heal but bad days happen. 

Shrink’s note: Thank you for sharing your personal experiences.

Personal Experience: The route to diagnosis, c-PTSD and anorexia nervosa edition

CW: eating disorders (anorexia), child abuse, substance abuse mention

//This might be under the jurisdiction of the trauma blog, but I’ll go ahead and submit. //

It is incredibly frustrating when you get misdiagnosed. The only thing more frustrating than months of ill-targeted therapy and medications that don’t help is having to go through the ordeal more than once. And that’s what happened to me.

My troubles started in late teens, I was having violent mood swings and just couldn’t predict how I’d feel in the next couple of hours. It was exhausting. Prior to that, I was a docile and withdrawn child and I went through continuous abuse and several traumatic events from the ages of 9-15. It was as if something inside my brain broke and the flood of emotions couldn’t be held back.

My first visit to the psychiatrist was uneventful. My official diagnosis was “hormones” and a desire to skip school. My mother agreed. Then came insomnia, obsession with my diet, nightmares, periods of depression, extreme distrust in everything and everyone combined with a pathological “clinginess” . Since I had no access to mental health resources, I self medicated with increasing amounts of illicit substances. Then it was apparent I had a problem. The second psychiatrist was determined that I had rapid - cycling Bipolar disorder (I). Needless to say, the medications didn’t do anything except make my symptoms worse. I knew something was wrong, yet I had no way of helping myself constructively. I was already underweight, with a bmi of 16, but it wasn’t seen as a big deal because of shitty Eastern European culture.

Eventually, I completely discontinued all my medications, got financially independent, moved to the UK, while remaining equally miserable and adding a substance abuse problem to the mix.

In the UK I was able to get better help, to an extent. The diagnosis that I had stuck on my forehead for a long time was BPD and my eating disorder was finally addressed. I didn’t agree, but it didn’t really matter. The little amount of DBT that I received was, however, incredibly helpful. It might’ve saved my life. After this whole incredibly boring story, the ultimate conclusion was that I didn’t have a personality disorder or a mood disorder. I had, and still do have a thing they call complex PTSD, and according to my understanding it is caused by prolonged trauma instead of a particular traumatizing event.

The diagnosis was huge for me because I could finally admit to myself that I was, in fact, abused and that instead of running from the memories and feelings I needed to deal with them constructively. My personality wasn’t flawed per se. There was still hope that I would become complete.

The moral of the story is - shit happens. Misdiagnoses happen. Especially when symptoms overlap or you don’t have a typical presentation. From what I’ve heard from other sufferers, c-PTSD is often mistaken for something else. It’s too common to be my unfortunate coincidence or a fundamental flaw of a post-communist medical system.

[Thank you for sharing your personal experiences! - Shrink]

Living in a Group Home Pt. 1/2: General Situation

(I’m going to do a Part 2 later, on actually working with the staff on recovery goals, but right now I have to do my chore (see below))

Let me start by saying a little about myself, for perspective: I’m 28, cis female, asexual and aromantic. I was diagnosed with depression at a young enough age that I can’t actually remember if if was before or after starting elementary school, and with ADHD a few years later, and I’ve been on meds for them (immensely helpful) ever since. I was diagnosed with Aspergers in high school. For almost three years, I’ve lived in a group home run by a local non-profit. I haven’t lived in a facility of this sort run by anyone else, so I can’t tell you anything about the spectrum of experiences different facilities afford.

The organization that runs my group home has three levels of care:

(I started in level three but moved to level two because I couldn’t handle keeping things clean by myself, to a degree that it could have caused trouble for the organization if there had been an inspection.)

I know a lot of people don’t like labels like ‘high functioning,’ but these levels of care do roughly correspond to those kind of descriptions. The people in the 24-hour house are often those most clearly unable to take care of themselves.

To be in the program I’m in, you have to be on disability, and like most of the others, the organization is my Representative Payee, meaning they receive my checks and give me an allowance. I usually have about $150 to work with a month, plus a little over $100 in food stamps. This has to cover food and other expenses like most toiletries. I have yet to figure out how the people who smoke (not allowed in the house, but so common on the side porch that the neighbors once complained) afford it.

Everyone pays for their own lunch and dinner, but most people participate in the group meal for dinner, paying for food for everyone one night a week. I don’t, because I’m a vegetarian and they always have some sort of meat. I think the requirements are that there be a protein, a vegetable, and a starch. People tend to make the same few low-effort things over and over, like chicken nuggets or spaghetti with meat sauce. Vegetables are usually boiled. Staff may help people cook depending on their ability to handle it on their own.

There are three staff members, though on most days only one or two are there at a time. They’re usually quite young, with bachelor’s degrees only. I don’t know how much they make, but from discussions with my therapist (employed by the same non-profit) I know it’s basically peanuts. House staff don’t often stick around for more than a year in my experience. Of the three who worked here when I arrived, one left to take a supervisory position with another organization, one went back to school, and one finished additional schooling and switched to working for tech support, which apparently pays better. There’s also a supervisor, who is in charge of several different houses and comes by at least once a week to coordinate things with the house staff and check in with residents. One of the house staff is kind of in charge of the others, but not by much. This person also takes care of logistical stuff like office and cleaning supplies and doesn’t work weekends.

As part of the program, everyone is required to get out of the house and do a “meaningful activity” on at least three days every week. What that means may vary according to the person. For example, spending time at the library would count for most of my housemates, but not for me, since I’d be doing the exact same thing I would at home (reading, browsing and writing), only without the occasional video games. Most people make use of the classes and activities offered by the non-profit at the same building where the therapist’s and psychiatrist’s offices are.

Activities include cooking class (more focused on producing “dollar lunch” for people who are around that day than actual teaching), gardening in the greenhouse (plants are sometimes sold at the annual craft fair to raise money for the organization), yoga and a group that goes to various events and locations of interest in the community. We have several good museums nearby that they visit sometimes. Counselors in the “life skills” area that runs most of these classes have a lot of turnover too, though not as much as group home counselors, and the available classes sometimes change depending on the skills of the current batch. I’m very lucky that we have a guy with a creative writing background who runs a writing group. It’s just a prompt and then sharing and commenting at the end, but he gives good feedback. I just worry that he’s being gentle with me the way I know he does with other clients (not untruthful, mind you, just careful).

Of special note is the art program. This isn’t art therapy, as the woman who runs it makes very clear. It’s actual art classes. The teacher has a degree in (I think) fine arts. There’s a more basic class, where there are specific projects assigned, and a more self-directed studio class you have to be invited to. Even in the more basic one, you can pursue your own interests if the project isn’t doing it for you. Until recently, a small local gallery donated wall space for us to display and sell our art, but now that the owner is retiring the teacher is looking for someplace new. And people do sell art, and for amounts of money that really make a difference when you’re on disability. One of my pieces sold for $120, which was a very nice cushion for the grocery bill. I kept only about two thirds of that, because I used the studio’s materials. It would have been 85% if had used only my own materials.

Socially, the house is pretty dead. There’s no conversation over dinner, though there sometimes is in front of the TV.

Entertainment-wise, it’s pretty much just that TV. It has a very basic cable package, and is on nearly constantly. There are some books around, but I’ve never seen anyone else reading. I think the books may have been left behind by people who moved out. We still have VHS that no one has gotten rid of, too. There’s also a Wii, but I’ve never seen that used either. One other person says he has a laptop, but I’ve never actually seen it. An older woman has an iPad, which she likes to watch videos on. We have one person whose English is quite poor, so her main entertainment is music from her home region. The staff and both used to play youtube videos for her, but now she has an iPod. I gather that she had a lot of money left over after a year or so of not doing anything with it but buying groceries.

The house itself is pretty big, and I gather that it’s one of the newer ones the organization owns. It’s a coed arrangement, with the guys having three rooms upstairs and two of them having to share, while the women on the main floor and the basement all have their own rooms. I’ve got the basement room at the moment, having switched with someone who was having more difficulty that usual and who the staff wanted closer to them. Bathrooms are shared except for the basement one, which I have to myself. There are two other bathrooms on the main floor, one for two clients and one for the remaining female client and the staff. There’s also one upstairs for the guys. The guys aren’t supposed to use any of the women’s bathrooms on pain of cleaning the whole thing, but it happens anyway because it’s more convenient to the living room.

There’s free internet but it’s not exactly great. The bandwidth on the guest network that clients have access to is terrible (250kps downloads per device, throttled) and about a year ago they started turning it off from 10pm to 6am. This is the same at every house, apparently, and apparently done because people somewhere were staying up all night online.

A few other tidbits:

[Thank you for sharing your personal experiences! -Shrink]

Personal experience - TBI

I had a stroke/CVA due to Traumatic Brain Injury as a child. This caused half my body to be temporarily paralyzed and me to have to relearn everything, including speaking, walking, moving the right side of my body, running, writing, using scissors, etc. I also had emotional difficulties because of it including an inability to control my emotions and tears when upset, migraine headaches as often as twice a week, aphasia (difficulty finding words), in addition to switching handedness, and potentially gender identity (as there was a sudden change in the gender I saw myself as between pre-stroke and post-stroke). i have also have depression, anxiety, ADHD, and executive dysfunction, all of which could potentially be exasperated by childhood stroke (and are recommended for screening of children who have had strokes in ongoing care, as they are more common in stroke cases). An Individualized Education Plan was also necessary, as it took me as long as four times as long to complete tests and homework and in-class activities. If anyone has any questions regarding strokes and their affect effects, I can help answer them as I experienced them.

Thank you for sharing your personal experiences! - Shrink

Personal Experience: Generalized Anxiety Disorder

I have been living with Generalized Anxiety Disorder (GAD) for quite some time and wanted to share my experiences here.

For me, it’s an almost constant worry about everything. It varies in intensity. Sometimes it is just a small thought at the back of your mind telling you “Things are going to go wrong”; but it is small and can be forgotten without much difficulty. Other times, it cannot be forgotten with ease; you keep thinking about it and it makes you feel tired and restless at the same time. And on the worst case, that thought telling you “things will go wrong” becomes an ocean of worst case scenarios, one worse than the other, consuming your mind and not disappearing, no matter how much you try to forget, to think positive things, to distract yourself. It stays there and makes you distressed, terrified, restless; makes you want to run away from everything. Sometimes, it isn’t even an ocean of worst case scenarios; your mind simply enters a fight or flee state because of a peak of adrenaline in your brain and you feel like something is deeply wrong and you’re in danger. That worst case tends to come in the form of anxiety/panic attacks and can be quite terrifying. For me it also makes it harder to trust people, to talk about feelings, because i fear i will say something wrong and create a disastrous situation. It makes me cautious of everything. If you want your characters with GAD to be more realistic, make them worry about little things. It doesn’t need to(and and probably shouldnt) be a full blown panic attack at every second. Make them hold their keys with an iron grip to make sure they dont lose them. Make them try to speak in the least offensive and clearest way they can (and make them fail at it and have someone misinterpret what they said for some conflict if you want :3 )

But most importantly; make your characters people. Don’t let their mental illness define them. Don’t make their entire identity revolve around GAD. And now i conclude my text. Goodbye.

[Thank you for sharing your personal experiences! -Shrink]

Personal Experience: Medication “Experiments”

Randomly thought of this because of recent events in my life, and if this has been said/is too much of a rant please delete and ignore, but I just remembered that doctors are weird about “experimenting”.

I took Zoloft for my bipolar for roughly five years. It gradually started to lessen in effect, even as we upped my dosage. So we switched to a different medication, can’t remember the name, that completely muffled my mania. It either made me depressed, or my depression finally had a chance to shine, but either way, it wasn’t right. I hated it, I wanted off, I wanted a different medication. My doctor decided to add an antidepressant instead, because I was a minor and had no say over what I took. The antidepressant helped a little, but it made me so “blah” that everyone noticed. Even the kids at school, who usually avoided me, started to notice something was different. And according to the doctor, that was what normal people felt like (yes, she said normal, which is a great thing to say to a depressed, suicidal child who feels alienated from his peers already). Normal was blah. Normal was empty. Normal was wanting to die but being too afraid to do it.

We switched psychiatrists. The new doctor took me straight off the meds I was on (no weaning, just told me to stop taking them) and said “we’ll have to experiment”. That’s also around the time I learned that I was always being put on new things. Nothing tried and true, just the newest drugs they could get their hands on. Stuff they didn’t know what the effects would be. And all adverse effects were met with “We’ll wait and see if it gets sorted out.”

This all came to the front of my mind because we changed my meds again just this month. My doctor is taking me off Abilify (finally a drug that didn’t give side effects, but still stopped working), which I’ve only been on for a few months, and putting me on Latuda. We’re also increasing my anxiety medication. He’s the only psychiatrist I’ve had who’s been careful about choosing my meds, but it’s still scary to hear the word “experiment” coming from a doctor.

So to anyone looking to write someone who’s been on and off a lot of meds, please remember that it’s just. So exhausting. So scary. So infuriating. And the words doctors choose affect the way you view medication your whole life.

[[It’s been a while since I got a submission! Thank you for sharing your personal experiences - Shrink]]

What are mixed episodes like?

The Scriptshrink consultants answer!

CW: Suicide, self-harm

Charlie

It's... weird, and absolutely terrifying to be honest? 

You get two kind of different presentations, one where you switch between pure mania and depressive symptoms rapidly, and another where the two almost occur together at the same time. I've only ever experienced the latter. 

In my case, it presented as being absolutely miserable, but so agitated. In my "pure" depressive states, I'm tired and lethargic and can barely get out of bed. I have suicidal thoughts and I want to self harm, but because I just completely lack any kind of motivation, I can't act on these thoughts. 

But when the manic symptoms kick in, it gets really frightening. I still feel as miserable, except now I have so much energy and my thoughts are moving so quickly that I end up thinking of countless ways to kill myself in excruciating detail, and these kinds of racing thoughts are just completely unstoppable. And it's scary, because I can literally see it in my head? All of the ways to hurt and/or kill myself are just playing in my mind like a movie. 

I'd also have constant ideas coming into my head, really exciting things like projects I could start, which is a normal symptom of mania. Except because I was also horrifically depressed, I'd talk myself out of them. It was like my mania was suggesting one thing, but the depression would talk me out of it. 

"I could go out and party/have lots of impulsive sex"            "No you can't, you're ugly and no one wants to be with you" 

 "I could write a book!"            "You have no talent and no one would read what you wrote" 

"I could paint!"             "You're awful at art and everything else". 

And so on.

I also barely get any sleep, another common symptom of mania, but instead of still feeling energetic and not needing to sleep, I still feel exhausted. I usually can't sleep because my thoughts don't stop racing and I can't seem to relax enough to slow it down. And I can't sit still. So I'll eventually get to sleep at 4/5am after trying for hours, usually wake up about 2-3 hours later. If I do manage to get more than 6 hours, it's really restless, I wake up a lot, and I STILL feel like a truck has hit me the next day.

Also this is really outdated but I think it's one of the best, most in depth descriptions I've ever read: https://thesecretlifeofamanicdepressive.wordpress.com/2008/01/29/the-insane-guide-to-living-with-mental-illness-the-mixed-episode/

NaamahDarling

It's pretty atrocious.

It happens to me a couple times a year, and because I am GOOD by now at catching it early and I have safety measures in place, it never lasts long now. It feels like depression, but there's an agitated edge to it.   I am more volatile emotionally. 

I dissociate? I think? A little.  What that looks like for me is having intense emotional reactions to things but having no connection to those reactions. Like, I might be crying wildly, but that's just my body doing it, and my mind is on the outside going "Whoa, damn, dude. That's pretty bad.  You gonna be all right there, little buddy?"  I can't stop it.  I am not even, after a certain point, even feeling any distress, I'm just a passive audience.  It sounds like that wouldn't be all that bad -- crying without feeling sad? -- but it's very bad, it's terrifying.   I'm always afraid I might do something else while "out of it" like that, and I don't know if I could stop myself, the same way I can't stop from crying.  They are very frightening! 

That weird dissociation? Also manifests as this dull static in my head, nothing feels like it matters or is real, I can be in discomfort or pain, I can be hungry or have to pee, and I just . . . don't care.  I don't care at all.   All I want to do is lie in bed and do nothing, feel nothing.  I do the bare minimum necessary to sustain myself.  Drink, use the bathroom, sleep.  I might do repetitive things like playing phone games or coloring in a coloring book (which can ground me) or do a puzzle.  I have to seek out grounding things.  Being around people helps, but I also hate it at that time because it's intrusive having to deal with someone else.

Mixed states make me feel helpless.  I won't know what to do.  My ability to make decisions, my executive functioning, goes straight to hell.  I won't be able to make myself food.  Asking for help is VERY hard, as I always feel like I'm in the way or unwelcome or am being unreasonable.  (That's a feature of depression, but when you add the agitation, it's SO UNPLEASANT because there's this insistent feeling that I NEED help, I really NEED it, but I can't ask for it.)  I am miserable and desperately want to ask for help, but it's very hard to do so, and I don't always know what I need, which makes it harder. 

I can tell one is coming on because I get agitated and irritable.  I get restless.  I want to DO THINGS but I also get bored more easily.  I start having trouble getting to sleep -- I just don't feel tired.  The not being able to sleep just makes it worse.  They can, in fact, be BROUGHT ON by a lack of sleep, even for just a couple of days.  This is why, when people try to get me to do things that require massive schedule upheaval, I get so distressed.  It might send me into a tailspin and I could go into a mixed state and I just . . . fucking do not want that at all ever.

When I feel one coming on, I notify my loved ones that I am going to need help with basic things more often, I start enforcing medication/bedtimes, step up the dose of my mood stabilizer, and, ideally, notify my doctor if I have one I trust. (I currently do not.)  This is usually enough to bring it down in a few days or a week, and it's not that bad if I catch it early. 

Treated, they typically last from a few days up to a couple of weeks before I get them under control.  I'm very good at it by now, and my routine works.  When I feel stable again, I drop my dose back down and see how I am doing. 

NOT treated, they may not end for weeks.  Had one a couple years ago that lasted like 3 months because insurance didn't want to pay for my goddamn mood stabilizers, and they are what keep me from having them.  I almost hurt myself and I am still very very very angry about it. 

Mixed states are just garbage and I HATE them.

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