When Mental Health Recovery Feels Like Two Steps Forward, One Step Back

It is well-known by now to those around me that I live with mental illness. I spend my days off writing for mental health organizations, coaching others through online forums and advocating for those who cannot advocate for themselves. I have a huge ache in my heart to help those who cannot help themselves due to the blinders of mental illness. I fight for them because I’ve been there. I’ve been a keynote speaker for many events and I’ve planned walks and fundraisers in the name of spreading the word on mental illness. All the while, I struggle deep down with my own.

My official diagnoses are bipolar 2, generalized anxiety disorder (GAD), post-traumatic stress disorder (PTSD), obsessive-compulsive disorder (OCD), chronic passive suicidal ideation and I am working to stay in remission from a 20-year battle with bulimia nervosa. These terrible illnesses have led to a complicated adult life filled with psychiatric care and hospitalizations, and things like electroconvulsive therapy (ECT) and more.

So, why the title?

This battle is a journey for sure. For over nine years, my psychiatrist went through every medication he could think of (and he’s the CEO of the Lindner Center of HOPE in Ohio, studied at Harvard and has been part of over 300 publications — he’s no slouch when it comes to this stuff) and I still wasn’t stable. I had four suicide attempts, 100 days in the psych ward, 30 days in residential treatment and I still wasn’t functioning on my own. Then he pulled out a medication from the 80s that I have to special order from across the country because there are few manufactures of it anymore, with all these “newer and better” meds. This oldie but goodie started to kick in for my depression. Then we added a mood stabilizer. Then the anxiety meds. Then the OCD meds. Then came more and more days of therapy just to keep me a functioning human being. But it all started to work on my illness. I was up and out of bed more often than not. I wasn’t dissociating from reality and my mind was a little calmer and not obsessing over germs and catastrophizing every life scenario. I started leaving my house occasionally on my own and I could do it! It was working!

For two years now, I have been “stable.” My bipolar disorder is very cyclical. Every three-to-four months like clockwork, I have two-to-three manic days followed by a week-long crash that I have to talk my way through or it will overtake me. (This is in addition to the situational depressive episodes and crashes I have in-between after things like my chronically ill son’s illnesses or the kids’ surgeries, etc.)

The problem with this current medication I’m on is that my body adjusted to it rapidly and I started to need an increase in dosage. Then another… until I was maxed out on this med, the only med that has ever stabilized me. We knew this day was coming — the day it would wreak havoc on my body, medically speaking, with severe weight gain, high blood pressure and blood sugar, and other side effects that come with some old meds. There’s a reason doctors resort to it only when absolutely necessary. But it was worth it at the time for me to be stable psychiatrically speaking.

So now we are at a crossroads. My cyclical spells are hitting me harder and harder. My physical health is in question. My days in bed and the catastrophic thinking are starting to take over again. So, do we do a full detox, put me in the hospital and start over again, knowing this could take months or years to get under control? Or do we find another way to work around it all? My psychiatrist is researching to figure out how to best help me.

I don’t know where to go from here and it’s not an emergency situation. I have enough therapy and dialectical behavior therapy (DBT) skills under my belt to work my way through most of the hard days. But that doesn’t make the battle in my mind less scary or less noticeable. I start to question my ability to finish grad school. Can I even hold down a job after I get done? I’m 37 and I’ve never kept a job because my debilitating anxiety prevents me from being away from home. My OCD and ruminations in my mind keep me from being able to focus.

Right now, if I’m 100% honest with myself, I am scared. I don’t feel well again. I don’t feel that sense of normalcy I felt a year ago. My mind wanders. I still have passive suicidal ideation. I recently had to talk to my therapist and just tell her that my thinking scares me, especially in the dark of night when the house is quiet and my mind goes to these numbing thoughts of death, but I don’t really want to die. I don’t want to miss out on life, but I also don’t want to be a “burden” to anyone. And in the throes of mental illness, your mind has a good way of tricking you into believing no one really cares about you and you really are a burden to everyone. And as a side note, it’s really hard to admit to someone that your own mind scares you. That’s not an easy conversation to have.

I fear this will only get worse. My boys go back to school next school year (in five months) after being homeschooled this year for surgeries and medical complications. I have been able to shelter them and take care of them this last year at home and letting them go to school (which seems so simple and trivial to most parents — it’s a “normal” part of life, just school) terrifies me. My fear for my son’s health and germs and all the things that could go wrong when the kids aren’t in my care and these ridiculous ruminations of everyday life just happening cause me to literally stop breathing. My fear of going out alone has returned. I can’t seem to drive my car without seriously talking my way through it. Pulling out of the driveway, my heart stops and I feel the wind sucked out of my lungs and my eyes go blurry. And why? Because I have a debilitating anxiety disorder.

I fight with my mind every day. I know in my heart I’ll never live normally but I will sure work as hard as I need to lead as somewhat “normal” of a life as is possible for someone like me. Will I be sick forever? Yes. But I make a promise to myself, my kids and my husband every morning when I wake up that I will work to be well. I love that every time I talk to my therapist, she ends with the phrase “be well.” Somehow, it always gets me through to my next session with her.

That’s all I’m trying to do. Live each day in the moment, as well as I possibly can. Getting from yesterday through today and into tomorrow.

I feel like, right now, I’m just in the “one step back” phase while I adjust my meds and practice my skills to live life. Overall, it’s still progress. And that’s OK. I’m still miles ahead of where I once was.

Two steps forward and one step back.