Beyond the Burns Depression Checklist

I’ve continued tracking my depression symptoms using the Burns checklist for another month. The oscillations have been a bit less extreme: There was a period of higher (worse) scores near the end of August when we had to put Trouble (our 2-year-old pet rat) to sleep. This was followed by lower (better) scores at the beginning of September when I got to spend some time with Banji and had my first in-person session with Wakana in about a month. Then I started a new game in The Sims 3 (my current family) and, well, I think the scores pretty much speak for themselves. I’m noticing that I tend to have much better (lower) scores when I go out and socialize; this is in part because some of the items on the checklist are basically asking “Did you interact with other people today?” but I think it tends to help my overall mood, too. My average for this month is 32.

Ziya’s scores on the Burns Depression Checklist August 17, 2014 to September 15, 2014

Ziya’s scores on the Burns Depression Checklist August 17, 2014 to September 15, 2014

The items on the checklist are organized into 4 categories: Thoughts and Feelings, Activities and Personal Relationships, Physical Symptoms, and Suicidal Urges.

Thoughts and Feelings

The first category consists of 10 items describing one’s subjective experience, including: “feeling unhappy or blue,” “feeling hopeless,” “criticizing yourself or blaming yourself,” and “difficulty making decisions.” I’ve been scoring fairly high in this category (relative to the others), with no particular items standing out as more or less problematic than the others.

Activities and Personal Relationships

The second category consists of 7 items that describe behavior and subjective experience related to work/hobbies and social life. Although I feel worse on days when I withdraw from my social network, the items I struggle with most consistently with are “motivation” and “avoiding work or other activities.”

Physical Symptoms

There are 5 items related to sleep, appetite, sex, and “worrying about your health.” This is the category I seem to consistently score the highest in. Even on really good days when my thoughts, feelings, and behavior would suggest otherwise, my body seems to be depressed. Hopefully soon I’ll learn whether that’s (in part?) because of a sleep disorder.

Suicidal Urges

The final category asks 3 questions: thoughts? desire? plan? Fortunately this is the category I score the lowest in – usually.

Instead of tracking each item separately, I decided to look at my scores for overall categories. To standardize the scores, I divided the total score for each category by the number of items in said category. As a result, all the scores represented on the graph below are between 0 and 4. (Well, 0 and 3, but they could go up to 4. I really hope they don’t!)

Ziya's (standardized) scores on the subcategories of the Burns Depression Checklist from August 17, 2014 to September 15, 2014.

Ziya’s (standardized) scores on the subcategories of the Burns Depression Checklist from August 17, 2014 to September 15, 2014.

Unlike the month I tracked last year, there seems to be a disconnect among my subjective experience, behavior, physical symptoms, and suicidal ideation; the lines don’t move with any kind of pattern that would suggest they have anything to do with each other (correlation?). One thing I do notice is that my Suicidal Urges are the worst (highest) when my Thoughts and Feelings are as painful as or worse than my Physical Symptoms. I can deal with having low physical energy, but when I feel really sad, hopeless, and hating on myself on top of that, it becomes pretty tempting to just stop existing. I think it’s way past time for me to start engaging in cognitive behavioral therapy (CBT)!

Finally, as I wrote when I first posted about this in Measuring Recovery: Part One, the Burns Depression Checklist doesn’t include everything I believe is important to consider when assessing my mental health (such as symptoms of anxiety). My goal is to eventually develop a way to keep track of changes in various indicators of mental health, including signs that I am becoming more healthy and not just less mentally ill.

I’ve started tracking other symptoms that concern me, rating them on the same scale: 0 = “not at all”, 1 = “somewhat”, 2 = “moderately”, 3 = “a lot” and 4 = “extremely”. Some of them are symptoms of anxiety, others have to do with depression … it’s actually kind of confusing. I’ve heard irritability described as a symptom of depression, anxiety, and mania/hypomania! I guess the point isn’t so much to associate them with the correct disorder as to be aware of how much they’re affecting me. This is an imperfect numerical representation of my recent subjective internal experiences.

I put the symptoms into categories that sort of mirror the ones on the Burns, but I haven’t done the kind of empirical testing that’s necessary to determine whether my “checklist” measures anything meaningful. For that reason I have decided to track each item separately, even though it makes for fairly messy charts. Here’s what I have for the first half of September:

Ziya's scores on anxiety-related symptoms September 1, 2014 to September 15, 2014

Ziya’s scores on anxiety-related symptoms September 1 – 15, 2014

Ziya's scores on physical symptoms September 1, 2014 to September 15, 2014.

Ziya’s scores on physical symptoms September 1 – 15, 2014

Ziya's scores on irritability-related symptoms September 1, 2014 to September 15, 2014

Ziya’s scores on irritability-related symptoms September 1 – 15, 2014

Ziya's difficulty concentrating and communicating September 1, 2014 to September 15, 2014

Ziya’s difficulty concentrating and communicating September 1 – 15, 2014

I’m inclined to see my tracking method for the additional symptoms as a work in progress, but I do like using one graph per category and graphing each symptom separately. I think I’ll stick with it as-is for a while, and make changes as I feel inspired. For example, I originally had 10 items; I added “excessive or out-of-control worrying” and “difficulty relaxing” on September 3rd. Though the graphs don’t reflect this, I also needed to re-arrange the items to create the existing categories.

The new items use the same scoring as the Burns specifically so I can compare them. Is there any relationship (correlation?) between my scores on the Burns Depression Checklist / its subcategories and the additional symptoms I’ve chosen to track? Honestly, I have no idea.

Pretend that You’re Feeling a Little More Pain

On Friday I was awarded 5 out of 5 possible experience points (XP) for role-playing my (tabletop RPG) character exceptionally well. My secret: I genuinely felt the wide range of emotions she exhibited, from pride to concern to fear to sadness to disgust at the vengeance another player character (PC) took out on an adversary (non-player character / NPC). I was raw and in the moment, responding to what was going on around me with relative ease… while still thinking about how my character would react, what she would say, etc. It was … brilliant, really. I had a lot of other exceptional, long-time role players to, well, play off of. We just get into character and go, and a story weaves itself, and the next thing I know I’m both exhausted and elated having experienced and expressed just about every emotion possible for the past several hours and having accomplished something meaningful… albeit in our collective imagination.

Then Fox and I took the weekend as down-time, which for me meant playing The Sims 3. All weekend. I’m happy with how my game is going and I’m getting to explore aspects of the game that I haven’t already beaten to death, so it’s a mostly neutral-to-positive experience. Except that my body hates sitting at the computer all day and the sims do really stupid, frustrating things and I’m starved for meaningful interpersonal interaction. I know I could pick up the phone or leave my house or actually interact with Fox (not that we haven’t been interacting at all, it’s just been sporadic and not satisfying enough to counteract the effects of staring at a computer screen all day) … but I’m kind of having some issues with intimacy. I don’t want to talk about how I feel or what’s going on in our relationship or my goals and dreams. He gets so angry whenever anything related to his career goals or working comes up that I find it best to just avoid the topic and let him exist on my the couch consuming the internet nonstop. And he comments on so many things that I do – how I’m sitting, whether/what I’m eating, what I’m reading or (heaven forbid) laughing at online, how I’m responding to the sims – that I don’t feel comfortable expressing myself musically or decluttering or otherwise doing anything really noticeable (heaven forbid I should distract him from his videos). If I were to actually go out and do something, then I’d have to explain myself and he might want to come with me so I’d have to wait for him and so on… *sigh* It’s a mess. To make things even worse, I’ll be sexually aroused sometimes but grossed out by the thought of any sexual acts (e.g. “what goes where? eww!” and don’t even get me started on bodily fluids) so I just try not to get too expressive when we are affectionate. Between that and the pain I’m having in my bad tooth and jaw and sinuses and ear (possibly affecting my hearing) I just want to leave my body for a while… but if I could, I might never come back…

Anyways I was playing The Sims 3 yesterday and, out of nowhere, “Cry” by Faith Hill starts playing on repeat in my head. Here’s a link to the official music video on YouTube.

If I had just one tear running down your cheek
Maybe I could cope maybe I’d get some sleep
If I had just one moment at your expense
Maybe all my misery would be well spent

Could you cry a little
Lie just a little
Pretend that you’re feeling a little more pain
I gave now I ‘m wanting
Something in return
So cry just a little for me

If your love could be caged, honey I would hold the key
And conceal it underneath the pile of lies you handed me
And you’d hunt those lies
They’d be all you’d ever find
And that’d be all you’d have to know
For me to be fine

Yeah…. And you’d cry a little
Die just a little
and baby I would feel just a little less pain
I gave now I’m wanting
Something in return
So cry just a little for me

Give it up baby
I hear you’re doin’ fine
Nothins gonna save me
I can see it it your eyes
Some kind of heartache
Darlin give it a try
I dont want pity
I just want what is mine

quoted from AZLyrics.com

At the time I interpreted it to be my frustration at not being able to feel anything while I was playing The Sims 3. The game has a nice numbing effect and I tend to turn to it when I’m feeling miserable. I’m still not ready to cope with the death of Robin Williams and I miss my pet rat Trouble terribly and I’m questioning whether it’s wise to even try to finish my masters’ degree in part because I had to get an extension for my summer class and I still have an F on my transcript from the last time I did that and my finances are in shambles and I can’t keep my act together long enough to take a course never mind finding and keeping a job and I have to wait two weeks before I’ll even be prescribed Lamictal and I don’t know if it will work and the infection in my gum will probably spread to my brain by the time I can have a dentist look at it and I don’t even know what I need to do to plan for my wedding in less than two months that my aunt might not be able to make because of her boyfriend’s health issues and I just want to take a walk outside and enjoy the nice weather and maybe enjoy some of the nice “yay it’s autumn!” activities friends post about on Facebook but I can’t pull myself away from the computer and FOX DOESN’T SEEM TO CARE ABOUT ANY OF IT AT ALL!!! All he cares about are the games he’s playing and what he’s going to eat and maybe the occasional hug, when he wants one. Well, based on our interactions as of late.

It would be nice if he would show that he cared about something like “hey, it’s gorgeous out, let’s go for a walk” or “hey, let’s finally straighten up like we’ve been saying we need to for over a year now” or “you said the mum needs to be watered, would you like me to do that?” or even “I love you, let me massage your feet while reciting Klingon love poetry” … yeah, that’s not going to happen. Once upon a time he was actually romantic but now… Now I don’t really want him to be romantic. The sexiest thing he could do now is get the fuck off the computer and go out with his scores of 7 on the Burns depression checklist since he started taking Wellbutrin / bupropion and earn a steady income we could use to get out of credit card debt (that’s affecting my credit rating, not his) and feed ourselves.

I spent most of the day yesterday numbly playing The Sims 3 and directing Faith Hill’s scathing lyrics at myself instead of him, followed by a couple of hours literally roaring at him. I mean I looked at him and yelled “Roar!” and he yelled back (playfully) “Rawr!” and I got even angrier and yelled “Roar!” and eventually he started sounding angry when he replied, “Roar!” and it felt good to get the anger out but it didn’t do anything useful. And then I went to bed and poured my heart out in my paper journal and had weird dreams about floods and dancing and actually feeling the wind on my skin for once which was awesome. Today I woke cold and alone and in pain. He got angry at me as I was looking online to find him someone else to call because the person he’s supposed to contact about his internship is never in his office and doesn’t have office hours posted and doesn’t reply to emails. He yelled at me and didn’t thank me and didn’t apologize. And he’s content to know this post is “going well.” I can’t live like this.

I guess what I’m trying to say is, I’m better at feeling the emotions of fictional characters than my own emotions because the latter are overwhelming and largely in response to factors I feel I have no control over. I’m angry at Fox for not seeming to care and not taking initiative. He apologized after reading this post and we talked a little, but we’re still having trouble connecting. It’s so tempting to just disappear.

Depression Bipolar Support Group Week 1

I had a kind of awesome experience: I was getting frustrated trying (and failing) to find a support group or group therapy for people with depression and anxiety, so I asked for help. Within 20 minutes of my request, Mom suggested a local group by the Depression and Bipolar Support Alliance. I canceled my plans with Fox so I could attend group, which had the added bonus of giving me a blissful day to myself; I spent most of it writing the equivalent of 5 blog posts in my paper journal. There’s so much that’s been going on in my head but I haven’t been able to express it because we spend so much time in the same room… I literally can’t do anything without him being aware of it and vice versa. I… this was the third “blog post” I wrote in my journal; I don’t want it to derail my train of thought right now.

So I had a lovely day of reflection and brain-reorganization and then I went to this group. I was really looking forward to it as an opportunity to spend some time with people like me. No need to wear the mask. I could just arrive as I was, exist for 90 minutes, and respond spontaneously to whatever was going on around me. Kind of like what I do with my friends, actually, but with strangers.

I’ll be honest, I’m not sure I like being around people like me. They don’t make good eye contact and their lives are really difficult and they’re sad and anxious. They speak in monotone and their body language is weird and they look bored or tired. Sometimes they have trouble listening with empathy. The guy sitting next to me had something to say, loudly and energetically and with grand sweeping hand and arm gestures, in response to everything. And he touched me multiple times before I finally told him “I don’t like being touched” – which isn’t really true, but strangers randomly feel the need to touch my arms and it drives me crazy. You may only touch me if I gesture that I want a hug or put out my hand to shake. Common courtesy.

*spends a few minutes hugging the touched arm to zir chest, protecting it*

The facilitator passed a laminated piece of paper with the group goals written on it around the room, so each person had a turn to read one of the goals. They were things like “to create a supportive environment,” “to keep what is said here confidential,” and “to understand that this is a support group and not therapy.” We each had a minute (more or less) to talk about how we’ve been feeling; I and another new person were welcomed to the group. I talked about having to slow down because I’m having trouble balancing my mental health and school and it’s difficult for me to go into a helping profession while I need so much help myself. Joining the group is an attempt at self-care.

I wasn’t really able to say much else, mostly because of Mr. Response for Everything sitting next to me. I was very tempted to ask him to stop and give others a chance to talk, but I thought the facilitator would do that if he thought it was problematic and he said nothing. I was new, trying to get a feel for how the group operated, and I didn’t want to step on anyone’s toes. I fell into my habit of waiting for permission to speak up, and it never came.

Typical.

When we were putting our chairs away one of the other group members came over to talk to me. He thanked me for coming and said he was sorry I didn’t get a chance to share. He encouraged me to come back next week – I guess I looked like I wasn’t going to. Anyways, I appreciate him reaching out to me and I really hope I was able to communicate that. I felt overwhelmed and like I just wanted to get out of there as quickly as possible. On the way home I said a bunch of things to my car that would have been really helpful to say in group; maybe the other people there would have been able to, you know, support me.

There was so much going on that I could relate to, all too well. I almost didn’t have to say anything because in a way it was said for me, and I still got to listen to how others responded to it. Financial issues, mental health issues interfering with career development, feeling as though my peers are doing so much better than me even though I’m just as intelligent and knowledgeable (maybe moreso, in some instances), loss, coping with changes I can’t control, feeling like I have no motivation, no direction in life, being afraid to go to the doctor, trouble getting the healthcare I need… I’m sure there’s something I’m forgetting.

It was… not really what I’d hoped it would be. But it got me out of the house interacting with people, even if I wasn’t very effective at letting them know I was responding to what they said. I think I gained some benefit from it. And it felt good to be welcomed by a group and the individuals who reached out to me (even Mr. Touchy-Feel-y). I’m willing to let the experience be what it was, and see it as the beginning of a process (that will continue next week).

Suicide Prevention Day

Ziya Tamesis:

If staying alive were enough, we wouldn’t be considering suicide.

Originally posted on Another Hope Entirely:

To be perfectly honest, I dread and resent this day.  I know that’s a very unpopular opinion, but I’m not sorry.  I just can’t embrace it and write a tearjerker post about my close calls with suicide and how glad I am that I didn’t succeed.

I’m not glad I didn’t succeed.  I’m not actively suicidal right now, but my life is difficult and painful every day.  If any one of my suicide attempts had succeeded, I wouldn’t have to drag myself through that every day.  I wouldn’t have to worry about whether I can find a doctor who will give me medication to manage my chronic pain.  I wouldn’t have to worry about becoming homeless because my disability check isn’t enough for anyone to survive on.  I wouldn’t have to worry about how to get therapy when no one thinks I need help.  I wouldn’t have to worry about…

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Intro – read this first

Ziya Tamesis:

I discovered this amazing blog today and believe everyone should read it.

Originally posted on What is therapy like?:

Intro

Hopefully this explains why I started recording my therapy. I wanted a way to remember all the important work that was happening. It also became a great way to communicate to my therapist some difficult thoughts, feelings and experiences, and for me to chart my progress. So it was meant initially as a way to express things going on for me. My hope by putting it ‘out there’ on the ‘tinterweb is that it may help someone is some small way as it has helped me. Therapy is not easy. I wish I had known some of the things I know now when I started out! I’m not an artist, nor am I very good at spelling – but well, they are not the important things.

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Psychiatry Strikes Back

I had my second appointment with the APN on Friday. It was at 4:30pm and I was a little late so I guess that played into it because it was near closing time but… she seemed very rushed. The hospital where I’m trying to schedule a sleep study needed more information and had called her, so she tried calling them back at the beginning of our appointment. They were probably closed for the day, so she left a message asking them to call her back… but I have no idea whether or when both sides will be available to talk in real time. She doesn’t seem to have time outside of appointments with clients to do anything relevant to their cases; I think that’s stupid and inefficient and a symptom of bigger problems in the U.S. “healthcare” system. But I digress.

I showed her the self-report measure she’d given me to track symptoms such as depressed mood, mood swings, irritability, food cravings, anxiety, sleep issues, difficulty doing things, and physical symptoms. I’d marked most items somewhere from “mild” to “severe” on most days. She asked questions about how I’ve been and family history of “mood swings” and filled out a form on the computer as I was answering her. She cut me off in the middle of trying to explain my family history, so she doesn’t have all the relevant information. At first she thought I’d never been on medication before; this freaked me out because I’d spent so much of our first appointment telling her about my experiences with the generics for Wellbutrin, Lexapro, Zoloft, and Buspar. I had to tell her a lot of the same information a second time. But she didn’t have any time to glance through my file before meeting with me, and there’s no way she could remember my specific case from meeting with me once a month ago. So I don’t hold it against her, personally … I just find it a bit difficult to feel safe working with someone under these circumstances. (And, well, she could have worded things a bit differently.)

Lacking the results from my blood work (I can’t find my copy and the doctor’s office has been closed every time I’ve called to have them faxed to the APN) and sleep study, aware of the problems I’ve had with medications in the past, and faced with some fairly severe self-reported symptoms, she said she would like to try putting me on Lamictal. I’d never heard of it before, so I asked what it was. It’s an anticonvulsant typically used to treat epilepsy but also bipolar. She said something about a possible rash and it takes a while to start working and you have to work up to the therapeutic dose slowly… at the time, it all sounded fairly terrifying. I’m not sure exactly what I expressed, probably a mix of anxiety and confusion, so she wrote the name of the medication down for me, told me to research it, and offered to meet again “as soon as possible.” Session over. I’d wanted to ask if she could refer me to group therapy for people with depression and anxiety, but there wasn’t any time for it.

I asked the receptionist for an appointment as soon as possible and she said the next available appointment is on September 26th! Another month. I … I can’t even comment on that. Another month before I even get to find out whether Lamictal might work for me … or I might be deathly allergic to it. Another month before I can even hear the name of another medication that might be worth considering. Hell, another month before I can ask her why she thinks it’s worth trying!

The receptionist made an appointment for me on the 26th, but also made a note to contact me if anyone cancels between now and then. I thought that was very considerate of her. It’s the same place Fox and I are going for our marriage counseling (which has been quite effective), so I can also check in with the receptionist before and/or after our weekly appointments. I appreciate her willingness to take that extra step to help me out. As frustrated as I was at the time, I also appreciate the APN encouraging me to research the medication instead of dismissing my concerns.

I haven’t been able to find anything particularly useful about Lamictal online, just a terrifying list of side effects. Most of the psychological side effects have become the norm for me, so I’m not too worried about them … I’m kind of “damned if I do, damned if I don’t” in that department. The thing that concerns me the most is that the online sources I’ve found so far claim Lamictal has only been found effective in preventing episodes of depression or mania, not treating current episodes. I really don’t want to take something that has the risk of adverse side effects if there isn’t any evidence that it might help me.

A friend of mine who has bipolar and works in a mental health setting told me that Lamictal is one of the bipolar medications that have been monitored (and found to be safe enough to continue using) the longest. It’s considered to be safe and effective, particularly for treating depressive symptoms. The severe side effects are very rare, so it’s unlikely I’ll experience them. Basically, I’d be crazy not to give this medication a try.

My friend also made a very good point: I’m not going to be able to have a productive, in-depth conversation with the APN. If I want to know something about Lamictal, I have to do my own outside research. I have to make my decision on my own, before I meet with her again. I already know the answer to the question, “What do I do if I get a rash or experience other severe symptoms?” – go to the emergency room. She won’t be available whenever it happens; I’ll have to wait a month to meet with her. So when I do talk to her, I need to ask the one thing I can’t get answered anywhere else, in order to make the best use of our limited time.

I’m going to ask her what the plan is for getting me started on the medication and adjusting the dose to find the one that’s effective and safe for my body. That way, we can work together to create one… or I can at least hear her thoughts and have a basic idea of what to expect. I need that in order to feel safe working with her.

If you’ve taken and/or know someone who has taken Lamictal, would you recommend it? Anything I should be aware of?

Can you recommend any resources that might help me make an informed decision?

Any thoughts about navigating the system?