It's been... hard... to get myself to blog again. I had started a blog post last Saturday, wrote some more on Sunday, Tuesday, and Wednesday, and never finished it. Finally I decided to just start a brand-new post and only include what I really wanted to from what I'd already written.
Things haven't been too great. In Daylio, my mood tracking app that I use every day (I'm on a 90-something day streak right now), most of the last week has either been "meh" or "fugly", at the 3 and 4 out of 5 level, where 5 is worst. I had treatment this past Monday, which normally makes me feel a bit better, but it didn't this time. And we decided not to spread the treatments out more at this time, since I did have a worse week the second week, during this past 2 week spread between treatments. We're making some minor changes in medications- I stopped the anti-psychotic I was on due to the results we just got from genetic testing (mainly that those medications aren't really expected to work based on my genes and are more likely to have side effects) and we're also upping my anti-depressant. It'll be a few weeks before we can expect any change due to upping the anti-depressant, but I also really hope that doesn't mean that the next few weeks are just going to be suck-y. We're also experimenting with having me exercise every day, which has been hard, just in the last 3 days. And it's especially hard that so far, I'm not noticing any big difference in mood despite the 3 day streak on exercise, plus the fact that today was a much more vigorous bit of exercise and I still feel fairly crappy.
I've been frustrated for some time now that I can't seem to get myself reading again. And I haven't figured out whether that's a cognitive problem due to ECT (issues with memory still and cognitively understanding things) or if it's an issue with motivation and depression (which could be since it feels like I want to want to read, but don't necessarily want to read). But maybe it's an issue with both. Here's my book pile near my side of the bed:
Today, I attempted to read some Pride and Prejudice since I had thought that it might be better reading something that wasn't new and wasn't something that I felt I should remember, but didn't. I thought it would read easy because I do remember it. But I couldn't get through more than the first chapter so far, and even that came slowly, and it almost seemed like it was harder with the language, maybe cognitively speaking. Of course that was a bit of a downer and made me feel dumb, so that probably didn't help my mood.
But then I switched to a different book that I've been wanting to feel comfortable reading... I Thought It Was Just Me (but it isn't): Making the Journey from "What Will People Think?" to "I Am Enough" by Brené Brown. Do you remember me going nuts over Brené Brown some time ago?? I've only actually read one of her books- Daring Greatly- but I've felt for awhile that the title of this other book speaks rather perfectly to me. Anyway, I finally started this book, after the Pride and Prejudice attempt, and succeeded in reading a lot more than I expected.
The first chapter is called "Understanding Shame" and I didn't get through the whole thing, but it also didn't really make me feel much better, since I kinda think shame is my biggest issue with my depression. Of course a big part of this book is "shame resilience" so I need to get through a lot more of it to get to the point of feeling better.
But then, reading this book is also what got me more interested in writing a blog post. I have some things from it I want to share. Brené talks about wanting to develop a definition of shame as a first goal.
"When I asked the research participants to define shame for me, they either gave me their personal definition or they shared an experience as an example. Here are some of their definitions:
- Shame is that feeling in the pit of your stomach that is dark and hurts like hell. You can't talk about it and can't articulate how bad it feels because then everyone would know your 'dirty little secret.'
- Shame is being rejected.
- You work hard to show the world what it wants to see. Shame happens when your mask is pulled off and the unlikable parts of you are seen. It feels unbearable to be seen.
- Shame is feeling like an outsider - not belonging.
- Shame is hating yourself and understanding why other people hate you too.
- I think it's about self-loathing.
- Shame is like a prison. But a prison that you deserve to be in because something's wrong with you.
- Shame is being exposed - the flawed parts of yourself that you want to hide from everyone are revealed. You want to hide or die."
Then she talks about compiling the definitions and coming up with a conceptual definition:
"Shame is the intensely painful feeling or experience of believing we are flawed and therefore unworthy of acceptance and belonging."
For me, ever since I discovered that Nasser and I were pregnant with RG, out of wedlock, I felt immense shame. Telling every single person that I had to tell, I felt overwhelming shame. Even now, when someone who doesn't know our history finds out that we were already pregnant when we got married, I still feel shame. Even though I don't wish to, don't truly feel that I deserve to, don't think worse of other people who have sex before marriage, don't think worse of other people who get pregnant before marriage. And yet it's still fucking there.
I feel shame about my depression and yet I still write about it and share openly with others, in general, because I think that there shouldn't be shame when it comes to mental illness. I was getting bloodwork yesterday, as prescribed from the ECT doctor, and the technician asked if I'm an employee for Boulder Community (because the paperwork said Boulder Community Hospital due to the association the ECT facility has with the hospital) and I said no, and then I honestly explained how actually I'm going through electro-convulsive therapy right now and they are located in the hospital. My honesty, unfortunately, simply led to some awkwardness with the tech.
Ugh, it's hard to not feel shame about depression when there still feels like a big sense of not belonging in many groups. Like I try to be open and honest about it, but it often feels like a fair number of people are less interested in talking with me because of that. Or at least a lot of people still feel uncomfortable talking about mental illness, and maybe I force people into those conversations more than they'd like because it's currently the overwhelming thing in my life. Really though, it feels like I can't win.
So, back to what we started off talking about, the medication changes and the exercise experiment... if these things don't really make a big difference for me, then we're probably going to be trying a 2-3 ECT treatment burst, kinda to jumpstart the getting better thing again. And this whole idea scares me. The idea of going through another mini-acute phase feels like a big setback, and it kinda feels like failure on my part (because I tend to put everything on my shoulders). And it also just feels like we're never going to be done with ECT. And as much as I feel like I have gotten significantly better with ECT, I do really want to be done.
Man, I kinda just want to scream out, I'M SO FUCKING FRUSTRATED WITH DEPRESSION! IT SUCKS SO FUCKING MUCH AND I AM SO FUCKING DONE! Because it's true.
I read an article, well most of an article, yesterday about a woman, a mother, and how much it sucks to have a mother who suffers from a severe mental illness and won't treat it. Her mother has schizoaffective disorder, which basically means she has symptoms of both schizophrenia and bipolar disorder. It was difficult to get through this article, because it made me wonder if this is how my kids will think of me someday. Like what if eventually I do give up on treatment because after however many years it just doesn't work for me? Because I truly am treatment-resistant? It just made me feel incredibly sad and helpless and hopeless.
I suppose I'm not doing very much in this blog post to give hope to others, and I apologize for that. It's my own lack of hope speaking up really loudly. And I know I need to move past that lack of hope in myself and just create it again, right? So maybe we'll write some things.
Hope statements:
- Despite all the treatment attempts and failures, my doctors continue to work at solving and fixing this depression I have. They have not given up yet.
- As frustrating as each depressive episode/rut/dip is, I'm still here and still fighting. I've gotten through so much already, I can keep fighting.
- As much as the depression can make me feel a lot of hatred towards myself, my husband and children continue to love me, as do so many wonderful, supportive people in my life.
- Nasser, especially, has seen the worst of me, many, many times, and yet, continues to love me so, so much. Despite how difficult and stressful my depression and treatment make life for him, he continues to do everything he can to help me when I'm down.
- My willingness to talk about my mental health and share openly my experiences is a sign of my strength. It's a sign that I do have more shame resilience than I realize about my depression, and it's something that I can continue to share about and hopefully give others some strength and willingness to share.
Not a lot of hope statements, but some at least.
My nurse at treatment on Monday wrote a beautiful note for me that I'm going to share now.
I'm going to keep working on it, and although I haven't felt a significant "I'm better" feeling from the exercise I've managed to do the last 3 days, I need to give myself some credit for having done exercise the last 3 days, despite feeling like crap. I went ahead and did it anyway.
One more book I wanted to share with you. I finished reading this one this morning, although I had read most of it during the spreading treatments out phase between acute and maintenance, so I don't, unfortunately, remember much of the rest of it. I will have to reread it for sure. It's a book sent to me at the beginning of ECT by my sister-in-law, called The Principles of Uncertainty, by Maira Kalman.
It's a book that's less story, and more reflections and art, which may be better for me right now with my current brain state. Here are a couple sample pages, from near the beginning:
May be a sooner reread than not. Maybe mixed with Brené Brown and Jane Austen, and exercise, maybe this will all help me in the long run.
All I can do is try, over, and over, and over again, as needed.
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