When For Better Becomes For Worse

April 30, 2016

“ I am back at home and times are hard. Brian treats me a lot like a child. He questions most things I do. He is always filtering what I say because I could be manic. I had a date planned and had a babysitter. Brian wanted me to cancel, so I did. He wants me in bed early. That fanned the anxiety flame and put me in the process of shutting down. I worry people will treat me like this broken person forever. It is devastating. Sometimes I just want to give up and be the person everyone thinks I am. It is hard to be making progress and to have people treating me this way.”

Dealing with mental illness is hard enough on its own, but dealing with a marriage in the midst of mental illness is extremely trying.  My husband and I were in a really good place before my brother passed away. We were tired but excited to welcome our fourth child. My health, however, immediately began to fail after Hunter died.  It was scared for Brian. He would tell me that I had lost my brother but he had lost his wife. When my mental illness started, I went to a very dark place very quickly. I became incompetent. I couldn’t take care of my children or myself. I needed someone with me at all times, to keep me from hurting myself. I essentially became a fifth child for my husband. He was alone. 

When I first became sick, he didn’t want to see it. It was too painful. He didn’t want to believe I needed help. I persisted, however, in asking for treatment. I knew something was wrong. Once I went into the hospital, I felt like I lost all dignity. I was no longer a wife but felt viewed as a child. The respect we once had was lost. My decisions and things I said were no longer trusted. When I returned home,  he didn’t trust me to watch the kids or be alone. He required that I complete all of my self-care activities or he feared I would fall apart. He kept inventory of what I did and how I did it. Always watching for signs of another spiral. I had to have eight hours of sleep, three meals a day, read my Bible, exercise, color my mandalas, and use my Emwave. 

I no longer felt like a wife, it was so painful. The pinnacle of this was when I scheduled a date night for us and he made me cancel so I could be in bed on time. I felt like a shadow of my former self. It was so trying. It actually made my sickness worse, in some ways. I further diminished my hope and gave me a reason to live. It made me fearful life would never be the same. I longed to be the Nurse Practitioner, wife, mother, and sister I had been. From where I sat, then, it looked like it may never happen again. I said  goodbye to a future self and became completely engrossed in my current circumstances. Only time would begin to heal these broken places.

Where Did I Go – Part 2

You may have noticed that I have been missing. It has been an eventful few weeks. A day I had barely imagined three years ago finally arrived. My psychiatrist and I decided I was ready to wean off of my medications. I had first approached the subject with my husband. I thought I sounded a little crazy even suggesting it. I had just had some relapse symptoms two weeks before. I just had a feeling in my gut. I had never felt it before. As I sat in church three weeks ago, I felt the Lord speak to my heart. He told me this was the end. He spoke to me, told me I was ready to heal. It was the end of this suffering. When something like that happens, it is hard to process. I had resigned to my illness, stopped praying for healing. I had decided this was my cross to bear for the rest of my life. I had accepted it. Along with medication, a psychiatrist, and a counselor, I could do this forever. There would be good times and bad, but I was strong. I could survive it.

Then, it happened. That healing miracle moment. I can’t describe how it felt. In fact, I didn’t want to believe it. I felt silly, but empowered all at the same time. So, I decided to ask my psychiatrist if I could begin weaning off one medication in a few weeks, my Latuda. She suggested we start now. It was a surreal moment. I thought she would want to do it down the line. I even gave her that out, suggested that we start in a few months. She suggested I start now, if I was comfortable. I was excited but nervous. So, the plan was to come off 40 mg per month until I am completely Latuda free. Then, wean off the Zoloft. The thought being that my Latuda is an adjunct to my antidepressant. So, stepwise makes sense. Then, two weeks into my weaning I had another moment with the Lord.

I was sitting in church. It was a normal Sunday. Weaning off of the Latuda was going well, without any withdraw symptoms or psychiatric symptoms returning. Then, I felt that same feeling I had felt weeks before. The voice spoke to my heart and told me it was time to wean off of Zoloft cold turkey. I had trusted the Lord the first time and decided it was time to trust again. Unwisely, I did not contact my psychiatrist for fear she would tell me I had lost it. I highly recommend that anyone considering changing their medications consult with their doctors first. However, taking my own medical advice isn’t my strong suit. So, I began the weaning process. It was already Sunday. I had run out of my medication on Friday and my psychiatrist wasn’t responding to my refill request. After doing some reading about Zoloft, it has a rapid half-life. So, by day three, I was already down to a 12.5% blood level. I decided to not refill my prescription and one was never called in.

Weaning off Zoloft was much more difficult than weaning off Latuda. I now believe that some medication form a dependency similar to drugs. I didn’t realize, that after three years, I had become so dependent on this medication. My body literally depended on it to function normally. I began having severe dizziness and light headedness. It was so severe it was hard for me to drive or take care of my children. Then, my heart began to beat very weakly. I couldn’t feel my pulse in my wrist. It was barely palpable in my neck. It was nearly impossible for me to exercise due to an increasing strain on my heart. Then, there was lightening like pulsations that went through my body, accompanied by dizziness and a pounding in my ears. At first, these symptoms would strike every few seconds. With time, all but the lightening and pounding would resolve. By the end of the first week, the pounding was barely noticeable. I will say, on the other side, it was worth it. However, if I had to do it again, I would highly recommend weaning slowly. If I hadn’t felt like the Lord was telling me to wean cold turkey, I would have weaned in a tapered fashion to lessen the symptoms.

What I didn’t expect was the return of my emotions. I thought that I was so feeling while I was on my medication. I didn’t believe myself to be emotionally blunted in any way. I just described myself as calmer. Once the medication weaning began, I began to notice small changes. First, I began to become tearful over simple things. A mom started crying at school after he son received an award. After seeing her beaming with pride, I began to cry. This hadn’t happened in three years. Then, I began to experience joy again. I thought I had been feeling happiness but I realized it was as if I was joyful behind a fog. All my feelings were there, but they were just a shadow of the real thing. Something so simple as hugging my child or taking them to the zoo now brought a flow of emotion. I could actually feel the surge of feel good hormones that came from positive experiences with those I loved. What I was feeling before wasn’t reciprocal. I would interact and perform the act of hugging or loving but there was nothing after. I was living off feelings from my past experiences. There wasn’t any new serotonin or dopamine being released. I believe this to be why I was always striving towards the next experience to bring me joy but could never be satisfied in an experience. The positive feelings would last only moments. It didn’t matter what the size of the experience. A trip to Disney would have given me the same satisfaction that a hug from my child would. I would loose the warm fuzzy feelings within minutes. I would then go seeking those feelings again. I was insatiable. I have felt more satisfaction in one hug from my child now than in almost the entirety of my mental illness on my medications. I see now why some patients refuse to go back on their medications. The loss of emotion and feeling was greater than I had expected. There is definitely a sacrifice of self and personality that comes from taking medications like these.

All of this to say. I wouldn’t recommend that anyone go off of their medications early or without a doctor’s supervision. I will say, however, that I knew when I was ready. It was the first time I had ever even considered the possibility. I was deeply physical and mental attached to my medication regimen. I liked the stability that they offered. I feared that I would crash immediately upon weaning. This just wasn’t the case. The reason I am sharing this, is for the person who is ready to wean off medication but scared. I want to give you hope that there is good to be found in the moving forward. I am still not off all of my medication, I am not certain I will never need it again. What I can say is that it has served me well. All of my medications were needed and helpful. However, it is not good to be dependent on these medications forever. There is definitely a physical dependence that forms. As well, there is opportunity for joy and pleasure without the medications. I didn’t realize what I was missing. I didn’t realize the life and feelings that awaited me on my path to healing. I am so grateful for both.

I will say that my family, as a whole has been accepting and encouraging. However, my spouse does not share my joy and excitement. I didn’t see this coming. I expected to see me improving and rejoice. However, he has been through so much. He has watched me hanging over the side of the cliff and pulled me back. He has walked in both the darkness and light of mental illness with me. This emotional rollercoaster has proved too much. It is hard for him to hope in a future where I am well. He had lost hope that day would come. It has not been hard for him to see my joy and celebration of my new self as a euphoric episode. When we fight, he tells me to go back on my meds. When I am angry about something, he tells me to go back on my meds. Life without meds is scary. It represents another unknown future. We had come to know the future. The future was mental illness and medication. It was a future we were prepared for. This is a new beginning, another unknown. Remember the family members and loved ones of those with mental illness. This journey affects them too. They need help, they need support. They need encouragement. These changes are life altering for them as well. Even though his words hurt, I know that he will begin to see the light again. He will begin to let down his walls and let in our new life. A life with all of our feelings and emotions. It will take time. I need to be patient with him, as he has been patient with me, I need to see his suffering. It has been measurable and it matters. I can’t wait to share more of my story with you. I can’t wait to see what the future holds. The Lord has spoken to me about some other adventures that may lay ahead. The good news is I now believe there is a good future for me again. I am allowing myself to walking in the light of day and celebrate where I have been and where I am going. The Lord is and has been good in both the storm and the laughter. He is here.