After a particular discussion with my therapist, she decided she wanted me to do a “PTSD Checklist for DSM-5 “, or PCL-5. Now, I’ve taken so many mental health inventories that I thought this would be a breeze. Check a few boxes, circle some numbers, boom boom boom I’m all done. But when I opened the inventory, it looked like any other, except for the box for text. Like an essay question. Huh. How’s that work?
From my poking around online, it sounds like the one I filled out was “with criterion.” The description above the text entry area was
It goes on to say that this box can be used by a clinician and compared against the types of “qualifying event” that are known to be possible causes of PTSD.
Needless to say, that’s quite the intimidating question. Like, let’s just visit the most horrible thing that’s happened to you, write it in this online form, and pop it out into the Internet. Sure, it’s secure, but it’s still scary.
In fact, just doing that, explaining that event and how it affected me, was pretty soul crushing. Something I’ve never ever said out loud or to another person. And one of the most difficult parts was picking an experience. Which one was the very worst? I’m getting anxiety lightning just typing this up. Imagine how the essay went. From that moment on, I have been “Zombie me” as my Wife calls it. It’s the version of me that’s so focused on wanting to curl up in a corner and die that I can’t pay attention to much else. Like talking. You get words out of me, but they’re flat and I’m likely to forget what we’re talking about. I feel like a bottle has been uncorked that shouldn’t have been uncorked. Having this stuff on my mind is a bit like terror, but constant. And talking about a bit of it with my therapist has been troubling, to say the least.
Next appointment with the therapist she gave me a “solid” diagnosis of PTSD. She said PTSDC, in that it’s chronic, but I can’t find any reference to PTSDC at all. There is CPTSD (complex) which sounds a lot like me when I read up on that. Regardless, there are a bunch of things that this diagnosis brings up. I’ll start with the factual and digress into the stuff my depression brain is telling me.
My treatment resistant depression may have something to do with lifetime PTSD.
Addressing the PTSD is something that can be done a few different ways.
Some of these treatments involve digging deep into the traumas in order to deal with them.
These things have been tidily bottled up for decades, and that worked well enough (until my life broke)
Oddly enough, I’ve only given my care team a quarter of what goes into my PTSD, and that’s the light stuff with few details if any. So that’s kinda crazy.
In order to work on this, I’ve been told it will get worse before it gets better. Therapists don’t say things like that. They use positive wording and avoid absolutes, always be on the bright side stuff. So that was scary to hear from them. So that’s a little scary.
I feel like the hole I’ve been trying to climb out of just got doubled in depth.
I’m doing a bit of reliving and feeling like a horrible, bad, undeserving person that I hate.
I feel like the ending of The Perfect Storm when they’ve fought the weather so hard, and finally they see a tiny hole break through. And then it disappears and they get run over by a wave the size of Cincinnati. (Oh, sorry, spoilers)
My psychiatrist offered inpatient (not insisted) and we both agreed that would be counterproductive, as that’s more for safety and stabilization. And I’m too destabilized to even think of hurting myself.
I feel horrible for my family. I was going to say like I’d taken a great leap backward, but this stuff is totally new and quite devastating, so I’m just sorry.
While I’m wide open on my mental health stuff, and talking or blogging about it, and wanting to help others like myself, this PTSD is technically still in it’s bottle, and behind a very high fence, and I’m never going to be sharing any of it. My wife doesn’t even know the details or depths of it.
Rambling post of a madman. but that’s where I’m at. Thanks..
My therapist has challenged me with writing a post for the blog, despite my depression induced writer’s block. For better or worse, here it is.
I’ve had my fair share of appointments. I used to only have one per month. Other times in my life (like right now) sixteen or more per month.
In the days pre-COVID, everything was in person. For meds, you needed to see the psychiatrist. For therapy, the psychologist or counselor. You go to your GP (general practitioner) for a physical, and of course that’s in person. In fact, I can’t think of any medical appointment that I would attend in the past that wasn’t at a physical location with the actual care giver.
Then COVID came around, and suddenly we’re all going online to take care of our health care and mental health issues. On one hand, it’s nice not to have to actually go somewhere, but I do miss the excuse to go through a drive through and get some overpriced coffee for a treat. In this post I’ll be giving my experience and opinions on the good and the bad of the virtual care world.
In person care
First, the pro category.
I enjoy meeting my care team in person when possible. I feel like they can get a better sense of me, my current mood, and pick up on any finer body language I may be throwing at them. It also helps me build trust. I haven’t had many I didn’t like, but the few that I wasn’t comfortable with have been in person. I don’t know if that means I have a poorer intuition with the few members of the team I haven’t actually met in “real life.” I not only build relationships with my primary docs, but with the staff, too. I like it when I go to check in and they know me by name. It makes it easier to get me checked in, but it also makes me feel a bit more like someone the organization cares about. The nursing staff are often there long enough to recognize me, or at least I can recognize them. If you’re going to get a shot, it’s better to get it from someone you feel you know than from a complete stranger.
Paperwork and diagnostics are easier in the physical world. When I get my PHQ-9 and GAD-7 (mental health inventories) they usually give me a clipboard. More novelty, but I like it. Meds, too, are easy to procure when you’re coming out of a physical visit. Pop on over to the local pharmacy, or in my case if I’m at the hospital I can just stop by the pharmacy there, prescriptions all ready to pick up.
For my GP who is downtown, I get to walk around and pretend to be a contributing member of society, maybe get lunch at one of the places I used to frequent. For those suburban appointments it gives me an opportunity for that drive through coffee I mentioned, or just driving around listening to music too loud. It can be a great way to kill an afternoon.
When it comes to doing group in person, I think there are some important advantages. Group therapy usually has some rules about what you can or cannot say in order to protect privacy, but more often prevent triggering behaviors. Rather than saying you were researching suicide, you have to say you were engaging in a problem behavior. It makes sense. But before and after group, or on a break in the middle if it’s a long one, you can actually chat with your group-mates. Not to talk about anything the program doesn’t want you talking about, but just life stuff. I’ve made more than one good friend on those breaks. That’s something I miss about virtual.
And the Cons..
Of course, if you don’t want to kill an afternoon, that can be problematic. Those in-person appointments require you to actually get there. So tack on a half an hour or whatever before and after the appointment. What was an hourlong appointment now takes up two hours of your time. This also makes scheduling the appointment more difficult. Can’t just slot it in an hour between meetings. It can actually block three of your hour slots, if you have any. And mileage and gas and whatnot counts too.
Remember what I said about prescriptions? The pro is also the con. If you don’t have them routed to your favorite pharmacy, you need to take the script there, and then wait for come back. Wait in line, as well. I actually get mine mailed to me, so I avoid all of this at the cost of waiting one or two days. And yeah, it’s only one or two days, if you can believe it. Something is super efficient in that system. Of course, I expect my next refills will take two weeks now that I’ve jinxed myself.
Getting dressed is another con to the in-person appointment. That sounds like a joke, but if you’re in a state where getting out of bed is difficult, taking a shower and putting on clothes (hope you did your laundry) can be a herculean task. If you have social anxieties, going out can trigger those.
Ok, enough haranguing on reality.
Let’s get Virtual
Most points are just opposite mentions of the above. If that’s an actual phrase. So these are pros and cons, all muddled up
You only have to technically dress from the waist up. Pajamas and the largest sweater I own seems to work for me. That doesn’t do a lot for my motivation to shower, unfortunately. And I find when I shower and dress at least I feel a bit more like a human being. Also, it doesn’t get me out of the house. While it’s only an hour block I get anxious beforehand and don’t want to go anywhere in case I’m late. I don’t get the return home trip to blow off steam or have some physical activity. As a result I’m usually pretty down, deflated, and crash hard after calls. You just can’t win for losing, I guess.
You don’t really get to see the care team or your group therapy peers very well. Yeah, there’s on screen, but I usually run in gallery view, so they’re at most half the display. And I find if I turn the view to only one specific person I feel like a creepy guy. That, and a quarter of the time it seems like someone is not showing video that day. Or is in such a way that you can’t really see them very well. (I’m looking at you poorly backlit with a virtual background on..) As for care team members, I can see them but I wonder how well they can see me. My DBT coach did say she noticed I avoid eye contact when I talk about safety or suicidal ideation, so apparently they can see somewhat well.
The video platforms are varied and extreme. Google Meet is quick and dirty, but seems sensitive to network issues. Zoom feels heavy handed and, well, heavy. My psychiatrist’s clinic uses their own flavor, and it’s super simple to the point of too simple. You never know if you’re waiting or need to click somewhere, or what. Quality is okay though. The end result is that it feels like a different experience for almost every clinic you work with.
The technical skills of the people on the other end of the line can be a real pain, too. The ones who don’t know how to mute, or less annoyingly don’t know how to unmute. Good microphones and bad microphones make it feel like everyone doesn’t have an equal ability to share. One peer has a mic so bad I just can’t understand anything they are saying. I don’t know if a facilitator has mentioned it, but I certainly am not. Which makes me wonder – how does my mic sound? It’s a high end mic and I record myself often, but on that platform do I sound like a duck talking through a toilet paper tube? It’s like wondering if you have bad breath.
That paperwork I used to do in the clinics are either no longer used, or done through an online tool. If you thought video platforms were a mess of differences, online assessment tools are even worse. Did you finish the assessment? Or did it not register so you have to do it again? Got your login credentials handy? I had one clinic switch systems and I’m honestly not sure which system was better or worse. What I am sure of is the fact that I have yet another account to keep track of. It’s health information, so you don’t want your browser to save your credentials, but LastPass doesn’t always remember to save your information. And if it does, you may have three different entries to pick from next time you log in. (Tip: It’s not the one you chose)
Meds are another one of those things that can go either way. As I mentioned mine are mailed, so the doc just puts it in the system and it shows up in the mailbox a couple days later. But if it’s something new I’m wanting to start right away, or a med for an acute issue, waiting for it isn’t always a comfortable option.
Honestly, virtual just isn’t real life. It’s easier, yeah, but that doesn’t make it better. The unhealthy side of me likes virtual so I can hermit better. But the other unhealthy side of me likes getting my Lattes in the drive through. I feel a bit like this was a bit of a pointless post, as virtual appears to be here to stay. I still get to go in for therapies that do something to me, like Ketamine, electroconvulsive therapy or upping my VNS. At least until they figure out how to do that remotely..
What do you think? Big fan of either direction? Got any good horror stories to tell – or better yet success stories? Take the fifteen microseconds it takes to share something in the comments. Thank you for reading!
Often, when I’m standing in the shower making the most important decisions of my life (i.e. staring off into space) I have helpful thoughts, and not so helpful thoughts. Today I had a thought that comes back to me often. Maybe I don’t have depression and anxiety – maybe I’m just lazy?” My mind loves that one, and usually just runs with it. The depression is just being tired. The anxiety is just not sucking it up and dealing with the world like everyone else.
But then little thoughts start jumping in with proofs. Reasons why maybe I am actually depressed and anxious. Things like…
The pile of meds I take everyday
The enormous pile of meds that weren’t effective
The Psychiatrists I see on a regular basis seem to think I an afflicted
My personal therapist, who’s been in the deepest reaches of my mind and assures me that, yes, I have some serious issues
The Care team at the Treatment Resistant Depression clinic – for even seeing me
.. and their prescription of Ketamine
.. and their recommendation and assistance in fitting me with a Vagus nerve stimulator (VNS)
.. and their medication prescriptions working in concert with my regular Psychiatrist
The tremor in my hands and legs from the most effective medication I’m on
That VNS, which is surgically implanted in my chest and neck. It gives me a zap every five minutes for 30 seconds
Two rounds of Electroconvulsive therapy (ECT)
One round of Transcranial magnetic stimulation (TMS)
The feelings of failure, dread, and hopelessness
CBT, DBD, IOT, PHP, MAOI, and every other acronym I can think of
You know what? That list doesn’t matter. You don’t need to prove it to yourself. If you have depression, you have depression. If you have anxiety, you have anxiety. Depression imposter syndrome feels very real to me, but I look at the evidence and feel how I’m feeling, and I’m assured it is real. Which is actually depressing, but that’s a different blog post. Don’t let those little shower (or elsewhere) thoughts try to impact your disease. They’re just thoughts going through your head, getting washed down the drain as they continue on.
My application for Social Security Disability has been approved. The fact that it took one month to the day for them to approve it tells me it’s fairly obvious to those who make decisions. Don’t have the details yet, but it will absolutely help us financially. I haven’t talked money much on the blog, but my wife and I were making good money in the tech and the health care industries. When I lost my job, it effectively cut the family income in half. Which has caused some stress. Disability won’t really make a huge change, but any at all will help.
On the other hand, it’s hit me fairly hard. Harder than I expected it to. I’m government certified disabled. It sounds like a permanent affliction, and the reality of it isn’t doing much to argue that point. It’s had me surfing for jobs online, and my career just doesn’t have anyone who works part time. I can’t handle full time yet. The fact that I was looking is progress, as a few months ago that would have sent me into a death spiral just thinking about it. Honestly, it was a pointless act, looking at jobs. Not only do I have the half time limitation, but so much of my technical knowledge has simply vanished. I would have to come up with a completely different use for my skills — and before you say consulting, think about the social and financial skills required for that.
VNS is going fine, had to back down to 1.0, or therapeutic level. It was just too irritating, and it made headaches feel worse. Still has some irritation, but more annoying than painful. Still doing Ketamine once a month and it’s something I really look forward to. For about an hour I’m not me and I’m not depressed. You know that viral video of the phone falling down the stairwell? That’s what it’s like. Only different.
I added that stupid “Positive” section last post and I guess I have to keep up with it. I’d say it might be DBT. I’m not knowingly using tools yet, but when I have to report in I can usually find a couple that I did use. Happy?
Don’t want to follow up with a negative section but I can’t think of anything else positive. Sorry, not sorry.
What positives have your accumulated this week? Throw a comment down below!
I’ve been incrementally turned up to 1.25, while 1.0 is the therapeutic target. Anything above that is a benefit, as long as it can be tolerated. Though I think next appointment (2 weeks) I’m going to ask to be set back to 1.0 for a bit longer. I haven’t been getting used to 1.25 as quickly as the other settings.
The sensation is actually less complicated than some of the previous. I can feel it “ramping up” and then it’s a strong feeling like an uncomfortable twisting feeling at the neck. That sensation fades over the following thirty seconds. It’s accompanied by a small choking feeling and something like heart burn, which is annoying more than anything else.
I have found myself using the magnet to temporarily disable the VNS much more often than any other time. I’ve got a loose magnet but I’ve also got one on the underside of a watch band, so it looks like a wristwatch on my right wrist. Actually, it is a wristwatch on one of the provided wrist magnets. But if I’m in public and I feel it kick in while I’m talking, I just reach up to my left shoulder as if to scratch it and the movement puts the magnet in just the right place. So subtle. My scars are so subtle now that Wife actually wondered what that redness was on my chest, until she remembered.
As for me..
I’m introducing a new section, positive news.
I had a trip to the east coast (the same one I did last year, without the following suicide attempt) which was good. I got to spend a ton of time with my daughter, we really get on well. She has a passion for road trips to match my own.
I got to see my brother and his growing family. With frozen custard!
I spent five days with my oldest sister. No plans except some day trips to various parts of New York City. The rest of the time was spent doing absolutely nothing. Some writing, a bit of playing music, and a ton of time having really good chats with my sister and her husband.
I’ve have had some freelance work contracts come through, including a new one that’s part of a series. I think I’ve made dozens of dollars this year. So not much. But it’s something, I guess.
Back to our regularly negative blog..
Logistically (therapies, schedules, DBT) things are the same for me, it feels like everything is unspooling lately. I feel I’ve broken in half after/despite the peace of my trip to the East Coast. Since then I haven’t been able to write, play music, or even take the Vespa out and wander around. While these are usually escapes for me, where I can forget myself for a bit, they no longer work. It’s like something just came and removed my ability to enjoy the last things I could.
I’ve been thinking about the “anniversary” all week. Remembering the hospital and so on. So much has happened in a year, and yet nothing feels different, except the various side effects. I reread my journal from my hospitalization and I was so upbeat on release. I had plans and schedules and an attitude. That all seems so foreign to me. I can’t remember if that was genuine or I was just saying the things I needed to say to get out of there. I do remember the day I came home Wife picked me up and it was a pretty day. Still warm like summer, but hope for sweaters was there. And we went home and sat around the table and had dinner in the fading light of the day. Just like before. And after.
It feels like everyone else seems to be getting on with their lives. Everybody knows neighbor X is a baker, neighbor Y is a salesman, and neighbor me doesn’t work because he’s got the depression. That normalization is one of the most isolating things I’ve felt yet. Somehow I keep thinking I’m the old, robust me (with some weight lost, even!) but that I’ve been temporarily hobbled by my issues. As this wears on it really feels like this is it though, how it’ll always be.
(In rereading this, that’s a lot of feels. It took about three hours for me to write this, should have been easier.)
Forever ago I found a cable knit sweater at Target. It was mustard colored and I loved it. It fit well, and it just had a sense of comfort. I went back and over a few weeks collected as many colors as I could find. Blue, green, beige. Sad I never found a red. The off white sweater was one size larger than the others but that made it even comfier.
I wore it all winter. I wore it to work and I wore it at home. In the summer I would find the lamest excuse to wear it. When I went into the “grippy sock jail,” aka hospital it was one of the few items of my own that I had.
Wearing that sweater gives me comfort and security. It was armor and it was what I knew.
Depression, for so long, feels like that too. It still makes me want to die, but it is also familiar, something I know, and at times, something that keeps me warm.
Last week, I visited my sister, who lives in a kind of remote paradise. My daughter was living there for part of the summer, and some of my trips purpose was to help my daughter move back home. It was an amazing visit. I spent time with my daughter, but also with my sister and her wonderful family. I took walks, I sat on a porch and read, and just sat there appreciating peace. I wrote about my childhood and about canoe trips, in an actual book.
I had two days of.. Nothing. Depression and anxiety weren’t there. At the end of these days I would be so exhausted that I could feel them, but it was only as I was going to sleep.
The closer I got to home the more the anxiety grew, and the depression poked its head out. Remembering that I had nothing to be, except broken.
“Getting better” has always scared me. So this development is very overwhelming. I worry that people will see me being more alert and active, and think “Great, he’s better now!” I worry the life I awaken to will be so very different from my old life. I will have to recreate myself, learn who I am and how I live my life.
I do know that I have more energy, but that a lot of it goes to wearing my “human face” and interacting with others. Ironically, the better I look, the better I’m putting on a good show. It feels a bit like I’m just going back to the time I was depressed but able to convince others I was fine. Back into the sadness closet.
I’m not there (“Better”) yet, obviously. It’s a long road. And I’m still not sure how I feel about walking that long journey. Or even if I’m willing to.
I haven’t seen him more than a handful of times in the last 20+ years, but he’s been a friend since just after high school. I had to miss getting together recently.
Here’s how the email exchange went down:
Sorry for the late reply. Still pretty rough. Did you get together with <otherfriend>? How was he?
Write anytime you can or feel up to it. I think about you often. I hope things improve soon for you.
<otherfriend> ended up staying here for a week. LOL. Was good to see him.
Even if last minute and we just go for a drive or something if there is ever anything I can do, please please don’t hesitate to ask.
Take good care of yourself, my friend!
And I just wanted to say I get people telling me they want to help, or they know how I’m feeling, or here’s a “helpful web page”, etc. Not disingenuous but sometimes just doesn’t click. But there’s something about the way you put it that was exactly the right way. Thank you so much. I will let you know when I’m up for getting coffee or something, absolutely. Have a great fourth of July!
That’s because they know they’re supposed to say it and then don’t think about the words they use. They just borrow someone else’s, and it’s not genuine.
With me, I’m serious. I want you to feel better. I’ve been depressed before and that was bad enough. I can’t imagine what you are feeling or dealing with.
Just know I’m here, and that I truly care. If you’re having an awful night and need a new shoulder to (literally) cry on. I’m here. If you just want to sit in silence and watch cute bunny videos on YouTube, I’m all about it. The difference is that this isn’t about me, I’ll be ok. This is about what you need to feel better.
So, like I insisted before…take good care of yourself. Please don’t forget I’m a text away…but be prepared for me to act if you ask for something.
I’ve thought about sharing or not sharing this account, but it’s had such an impact on my whole life that I really want to get this one out. This is why I’m anonymous, and thus keeping everyone else in the entry anonymous.
When I was in high school a million years ago, I used the BBS systems extensively. They were servers you would call with a phone line and your computer. You could discuss things, or on some systems you could chat live with multiple people. The community was small, and we all ended up getting to know each other well. As a result, many of my friends were mostly met online. Back then, it wasn’t a familiar concept, so people didn’t always understand how you can be close to someone you’ve never met, or how we can all communicate in general.
One of those friends was the only kid I knew with a proper punk mohawk. He was a little obnoxious, super creative, and pretty sensitive. He made music and even handed out cassettes of his work, which was usually a little bit out there for my tastes, but it was cool nonetheless.
I was on one of the chat systems one night, and eventually it was just the two of us chatting. He was going through some stuff, I was going through some stuff, and we were both just mostly commiserating. Ironically, my “stuff” wasn’t that bad, as it usually was. I was talking philosophically about the pointlessness of life, using the example “I mean, what’s to stop us from just driving into the monument by the river and ending it all?”
I thought I was pretty clear.
The next day on the way to school, he hears something over the speaker on the school bus about a suicide. He went to the public school, I went to the private. But all he heard was “suicide” and remembered our conversation. So he was pretty upset. He told his school counselor who called my school and I got called into the counselors office.
I don’t remember most of the conversation but I think he just made sure I was safe, and then gave me a speech about seeing ahead to the future and not living with “blinders on.” I went back to class and didn’t give it much thought. Again, I didn’t feel very depressed.
After school I walk home with a different friend, and at one of the intersections I see my mom’s car. Odd. But I’ll take a ride home any day.
“Don’t you ever do anything like that again” she snapped, when I got in the car. I was taken aback but she explained the school had called her and told her all about it. She was mad. Not just irritated, but the kind of mad that’s a little scary. And that was the moment my respect for my mom was permanently marred.
She thought it was a prank or something, I guess. Regardless, that’s not how you’re supposed to respond in a situation like that. Make sure I’m okay first, maybe? Ask me more about what happened to understand it better? As a parent I know how hard it is, especially when they’re in high school, but what she said comes back to me often, and did even more when we were raising our kids. It hurt to my very core. And it still does.
In the end it actually helped me later in life. I did my thing, and didn’t worry much about what my mother would think or say of it. Joining the military, dropping out of college, moving in with this girl I really liked, etc. I just did them and let her know about it, but I didn’t ask her advice or opinion. That one statement so many years ago made me feel emotionally cut off, and it allowed me to just be with my own emotions. And those decisions all turned out to put me on a really good path in life, surprisingly.
I’ve since had much worse times, including my own actual attempt and threats. So many therapies and meds and doctors have passed, but I still think of that day. Mom died a decade ago or so, and as a result she wasn’t around when I was going for ECT, or in the hospital. I sometimes wonder how things would be different if she was still alive.
The friend who caused all of this committed suicide a few years ago, and I think about him often. What he was going through, how long he persisted, and what the darkness felt like falling from that bridge.
I forgot to add this to the last post, but it’s a bit of an update on my neck scar from the VNS. Both scars are fading nicely, and the chest scar is really getting light. My neck is a little bit redder, but I’m guessing that’s from collars and everything else that abuses it. Assuming it’ll come along eventually.
I do find that driving long distances the seatbelt hits my chest device square on, and the belt also runs right along the neck scar. They’re not so much as tender anymore, but over a couple hours it starts to be uncomfortable. So I’m resorted to either adjusting position, which is not easy, or not using the strap. It ends up feeling like the old days, when all you had was a lap belt and mom smoked in the car.
What’s interesting though is that you can see and feel some of the electronics. The connector is a small bit of wire which is wrapped around the Vagus nerve. It’s then doubled back upon itself and run to the device implanted just below my collarbone. The nerve connection is a little lump at this point and not only can you see it (not a zit) but you can feel it. Which is a little odd feeling.
There is something called Twiddler’s Syndrome, which is when a patient fiddles with their implant (pacemakers have this issue also) enough that the fiddling causes something to not work right anymore. It could be a lead coming off, a wire wearing through something, etc. So I’m being careful not to mess with it much. It’s a pretty rare syndrome, but my anxiety is quite aware and mindful of the issue.
You can also see the wire leading from the connection to the device. That one is a bit more subtle, but there regardless. At rest you really don’t see it at all.
As far as the scar is concerned, I don’t think about it much anymore. It’s the beginning of summer, which means t-shirts instead of collars and sweaters, so it’s out in the open. I don’t think people notice it much, and if they do they’re not saying anything. Because it’s not scary looking like in the beginning, I don’t try to hide it or anything. Although if someone asks and the timing it right, I’m going to say I got it in a knife fight. And you should see the other guy!