Welcome to My World

Every time there's a natural disaster or mass shooting or other terrible tragedy, I feel almost desensitized to it. Not really desensitized; it's more that I'm hyper-aware of every single danger in everyday life, so when something really bad happens it doesn't shock me like it seems to do to other people -- it's exactly what I'm expecting every day. I'm more surprised when bad things don't happen, and I always feel like I've only barely escaped them and there's still tomorrow and there is no safety.

In fact, in times of tragedy, I feel a sense of relief or... like the universe is finally aligned to my experience of reality because now everyone else feels how I feel every day, notices what I notice every day, is sobered into awareness like I am all the time... every time the sun forces its blinding light into my eyes without my consent, every time the phone screams at me its sudden demands. Those everyday things put me on high alert already.

CPTSD can change sufferers' worldviews so that they expect hostility even when it makes no sense. Sometimes I find my mouth offering profuse apologies over trivial matters (things that don't require apologies, things that I'm not even responsible for, etc.) because I expect that I have to appease seemingly kind and reasonable people before they randomly and abruptly turn on me. I'm surprised when everyone I meet doesn't turn out to be a mass shooter.

Why I Hate Jenga

I used to enjoy the game, back when it was just a game. Carefully pulling out a wooden block from a tower of wooden blocks and placing it on the top, trying to build it as high as you can while it becomes proportionately more unstable, eventually toppling over. Now they even have -- I'm not sure what to call it... My Size Jenga? -- that's as big as you are. Ha. I'll show you life-size Jenga...

I'm already sleep-deprived, but if I take out the medication block, will tomorrow morning build my tower higher -- or destroy it? And which block should I choose -- the pill that frequently doesn't work, or the one that reliably works too well? Now I overslept; should I knock out the breakfast block in order to make it on time to work? Of course it would be safer to sacrifice the doing-my-hair-and-makeup block... except that my looks are the only part of my tower that is still relatively stable. Can I really bear to poke holes in the entire thing? Do I really want to build a tower to the sky if that tower is entirely frail?

Should I pull out the block of dignity and reach out to a friend during a flashback? It might build the tower of friendship, but will that friendship go toppling over when I really need them? And which side should I pull from -- the old friends who are probably tired of dealing with my same old issues, or the new friends who might be weirded out? What can I afford? What is going to get the best ROI?

Do I pull the block of stability out of my current living arrangement (renting a cheap room) and place it on the tower of mental clarity that the peace of my own place would afford me? Because the last two times I tried that, it came crashing down and I had to start over. Do I work thirty hours just to get benefits, even though it would be healthier for me to work about twenty? Do I push it to forty and sacrifice the block of health to build the career tower? Because just about every time I've tried that, it all comes tumbling down. No matter what I choose, I'm in a precarious position and my life is perpetually on the verge of ruin...

I used to be a believer in Spoon Theory, but I think this "Jenga Theory" is rather more accurate for me. Spoon Theory does a good job at showing how there are never enough resources, but Spoon Theory doesn't depict the risks involved with choosing one spoon over another, nor the consequences of making the wrong choice. My life coping strategy is similar to my survival strategy when I was in graduate school: Eat on Mon/Wed/Fri, sleep on Tue/Thu/Sat, breathe on Sunday. I try to balance what I'm sacrificing so that it's not always the same area suffering. But something always suffers, always.

Medication is Complicated

For a long time I was reluctant to medicate because I didn't know I had CPTSD and its flavor of insomnia; I just thought I must not be practicing good sleep hygiene, I must not be getting enough exercise, I must be doing something wrong, not trying hard enough. I've tried a lot of natural supplements for sleep, but they had no noticeable effect. Same with over-the-counter sleeping pills.

Over the years I've taken Trazodone for sleep off and on. Trazodone is an antidepressant, but it's used for insomnia in low doses. It's not a simple fix, though. Trazodone is supposed to be taken on an empty stomach -- but then I have that whole night eating problem, so that usually wouldn't happen, which might have interfered with its effectiveness. Whatever the reason, I could not get a consistent result with it. I experimented with the dosage but still couldn't figure it out. Sometimes it would not seem to do anything on a full dose, and other times even a half dose would quickly sedate me and last through the next morning.

Timing was another issue. Taking the medication too late at night would ensure morning grogginess, so it needed to be taken at least nine hours before I needed to wake up in the morning. But Trazodone would make me groggier if I took it too many days in a row, so I tried to take it only when needed, and by the time I couldn't sleep, it was already too late to take the drug. Also, there was only a short -- maybe 15 minute -- window in which it would make me sleepy, so if I missed it, I was out of luck. I ended up saving the pills until after a severe episode of sleep-deprivation for a bit of respite, which was hardly a solution.

I tried Ambien for awhile and it was effective for onset insomnia, but I would wake up at 4:00 a.m. every morning. Also, I understand it's not a great long-term solution since it's addictive and the sleep is less natural than one you would get from an antidepressant.

Now that I know there is a very real and valid reason for the chronic insomnia, I am on a mission to find a medication that will work for me even if it has to be long-term. Recently I began taking another antidepressant for sleep called Mirtazapine. Unlike Trazodone, it's meant to be taken every day, not just at times of sleeplessness. One of the side effects is increased appetite, which for me is a good thing. My doctor told me to give it a week because there may be some morning grogginess initially. I took it for seven days and had no problems getting to sleep, but I felt extremely sedated every morning. After that I tried taking half doses. I still felt way too sleepy in the morning, even after it made me sleep ten hours. Then I tried cutting it down even more, but I felt strangely restless at night.

Then my doctor prescribed Nortriptyline, another antidepressant at a low dose, and I couldn't tell that it did anything at all. Doubling the dose gave me that strange restless feeling. Theoretically I could have kept trying different things until I found something that worked better, but in real life I was barely functioning and couldn't risk going on like that. So I went back to the Mirtazapine. I figured feeling tired all day long was better than feeling tired all day long and tossing and turning all night.

What this means for my life is no more alcohol and I'm done for the night at 9pm. It's a trade I will gladly make if it means sleeping regularly (and I already hardly drank for sleep hygiene reasons). Thankfully I don't feel so sedated during the day this time, so maybe my body is adjusting to it or maybe I was just super tired before.

In conclusion: Medication is not a quick or simple or airtight fix.

Food and Sleep

"...too tired to eat, too hungry to sleep..." - Nada Surf, "See These Bones"

In my quest for sleep, I have joined a gym and also started taking dance classes (in addition to weekly salsa practice), thinking that maybe I could induce sleep by wearing myself out. But so far the insomnia persists, and I am realizing more and more how much my sleep issues are tied to food issues. I knew I had some food issues, but I had convinced myself I just didn't like food (which is not entirely untrue... I've never been terribly interested in food).

Eating disorders have been linked to traumatic stress disorders. I have a new therapist now because my insurance changed, and she calls my eating behavior an eating disorder because "any time you use food to control, it's an eating disorder." I'm not sure about that, and sometimes it matters what we call it, but in this case I don't find the label helpful -- I just want to fix it. We started doing EMDR for food issues, so I'm making a point to be mindful of anything I notice around food.

One thing I've noticed for awhile now is that it's hard for me to identify when I'm hungry or full. Sometimes it's due to upset stomach (another symptom of CPTSD), which can make me feel like I have no appetite. As a result of being so out of communication with my body, I tend to make food choices based on what I think I 'should' do -- what's healthy, what's inexpensive, what's the 'right' time, what's the 'right' amount -- regardless of appetite. I also noticed that I'm constantly holding my stomach in, even while I'm eating. I'm sure that's not helping my stomach issues! One of my worst food habits is binge eating late at night. I almost always do this, and the insomnia is often worse if I don't.

In addition to physical issues, I noticed that I feel a lot of shame surrounding food. I didn't realize until I heard myself say it out loud that I feel embarrassed that my body requires fuel to function instead of just being able to run off willpower, and that eating three meals in one day seems like an absurdly luxurious indulgence. I also alternate between indifference and anxiety about hunger. I simultaneously feel like I must eat and I shouldn't eat, so I'll either eat way past full or else skip meals. I guess this is where the need to control comes in.

My therapist suggested doing breathing exercises from the belly to practice releasing my stomach, and she put me on a diet of intuitive eating: "eat whatever you feel like"! This is hard for me: First of all, I usually don't know what I feel like eating because I have convinced myself that I don't like food. Plus, now I have to acknowledge my needs and wants, which brings back the shame of having them. It's hard enough to admit that I need food, but wanting food is just gross to me, especially if it's something unhealthy. For me to admit wanting food, I usually have to make a joke about it.

I am learning to trust my body, though. My body tends not to crave unhealthy foods, but I often would force-feed myself unhealthy foods I didn't even want just because they were available, due to the panic about being hungry. And listening to my body is applicable to more than just hunger. Since I've been eating intuitively, it's been easier for me to rest or exercise when that feels like what I need in the moment. And if my body for some reason lies to me and tells me to eat an entire package of Oreos in one sitting, my brain still has veto power -- so there's no reason not to listen to my body.

Organizing Chaos

 

This whole blog has been very difficult to write, because I'm trying to make sense of something that is so... well, complex. I'm trying to focus on just one aspect per post, but they are so interrelated, it's hard to isolate one symptom from the rest. It can take me hours to write one post. If I want to write about having a total meltdown on a work trip, do I classify that under hyperarousal, sleep deprivation, affect dysregulation, travel, or career?

In the end I have a tidy little post where everything seems so clear and simple, which it isn't at all, but I need to organize it.

Chronic Insomnia

Well, just as the physical fatigue left, insomnia stretched out into its place.

(First of all, a tip: If someone complains of chronic insomnia, do not well-intentionedly ask them, "Well, have you tried melato--" Yes. Yes they have. That was the first thing they tried. And it didn't work, and neither did the next five things you're about to recommend even if your coworker's sister's friend's husband swears by it, and reminding them of this is only adding to their frustration. Sleeping pills can work temporarily, but they bring their own complications. Anyway, PTSD insomnia is not regular insomnia, so the same treatments might not help.)

The word "insomnia" has different associations for everyone because we've probably all experienced sleepless nights to varying degrees. But what might be merely annoying and inconvenient to an occasional sufferer can be crippling and dangerous to someone with chronic insomnia. It's completely debilitating. Life tuns into an attempt to make it through the week -- and this is just one symptom. Combined with other symptoms of CPTSD, it can be hell.

If you've never experienced severe sleep deprivation, let me try to explain what I experience when it's extreme: My senses seem dulled, or I might get sensory overload very easily. I start processing English word-by-word, as if it is my second language. My body starts twitching. I get very irritable and think unreasonably negative thoughts. (On the bright side: my math skills improve. Your results may vary.) Even when I'm this tired, I still might not be able to get much sleep.

I have long been aware of how much insomnia steals my life away. Often I hesitate to make plans far in advance because I have no idea if that's going to be a good or bad week for me in terms of sleep. When I do have plans, the choice for me is usually canceling them, missing out and letting people down, or attending like a zombie and not having or being much fun.

If stealing my life wasn't enough, lately it has become more apparent to me how much sleep deprivation changes my very personality. I'm not terribly social to begin with, so when I'm tired, my social energy is the first thing to go. Interacting with other people is too high up the hierarchy of needs when you're just trying to stay awake and remember your native language. So I don't even feel like myself anymore.

I'm so used to insomnia after having it be my "normal" for so many years that I didn't even realize what a big problem it was until it started interfering with my activities to the point that I could no longer participate in them at all. For many years, waking up tired, fighting to stay awake at work, and yawning my way through evening activities were just a given.

Some times are worse than others, but I recently had a couple of weeks that were so bad, I had to flake on all my commitments except for work. I decided sleep is my new hobby, since I demonstrably can't do anything else anyway, so I made a Sleep Action Plan with a strict diet, exercise, and sleep hygiene regimen. Hopefully it will help and I will develop some habits that will stick around until I don't have to make them my main focus anymore and can actually have my life back to some extent.

EMDR Therapy

EMDR stands for Eye Movement Desensitization and Reprocessing. It involves following the therapist's fingers (or lights) moving back and forth with your eyes. It sounds like hypnotism, but the patient is not getting sleepy -- they're focusing on traumatic memories. There's more to it, but I won't go into the details. Although EMDR sounds weird, it has surprisingly been found to be one of the most successful treatments for PTSD.

No one understands exactly how it works, but the eye movement mimics REM sleep, which helps integrate experiences in long-term memory so that the patient is not constantly reliving the past. Something about the bilateral stimulation helps to connect the left and right brain.

I tried to focus on memories while tracking with my eyes but I'm a terrible multitasker, so Z tapped on my knees instead, alternating left and right. It still provided bilateral stimulation of the brain, but it worked a lot better for me since I could just close my eyes and focus on one thing. EMDR is a very strange activity, though, and it felt a bit silly since I could never tell if it was doing anything in the moment.

We did EMDR almost every week for several weeks, during which time my symptoms seemed to be worse, if anything. But sometime after the last session, I was suddenly doing a lot better. Some people experience immediate relief even after one session, but everyone is different. Z says the EMDR therapy could have helped to "loosen" things up, and maybe that's why it took awhile to experience the effects of it.