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.

Tales From the Psychiatric Ward – Article 2

This article reflects on my time in University of North Carolina, Chapel Hills Neurosciences Hospital. It is written about my time on the Post Partum Unit and is in contrast with my time in both the Psychiatric ER and the General Population Unit. There are about 15 beds total, in the country to specifically treat post part depression patients. Though, it is one of the most common illnesses of pregnancy. These sites are studying how to treat this patient population. As this mental illness can be much different from other mental health issues. The model under which these units function, I believe is a reflection of what mental health care should look like in our country. Please support these sites and help them fundraise. Reach out, donate to these centers. Write to your politicians and encourage them to fight for funding for post partum depression and mental health in the U.S. If you would like more information on my time in the psychiatric hospital, continue reading my blog. I will soon be covering the part of my story involving my mental illness and hospitalization.

10 Things That I Wish You New About Quality Psychiatric Treatment:

1. You get your own room.

This 5 bed unit had four individual rooms and one shared room. Often, two women who had been there longer and became friends would offer to be roommates and let the new moms have their own space. We were never forced into a roommate situation, and when we did room together we weren’t afraid of each other. We had gotten to know one another and form bonds.

2. The doors to the bathrooms locked.

We were actually allowed bins with bathroom accessories that we weren’t otherwise allow to have in our presence due to suicide risk. When they told me I could use a hair dryer and a curling iron I started crying. It felt like a level of my dignity had been restored. We were even allowed to put on makeup. In other units you couldn’t use makeup that contained a mirror, as you could break it and use it as a weapon. Here, they wanted us to feel attractive and comfortable in our own skin.
3. There were times of the day where the nurses would take us off the unit.

We were allowed to go off unit with the nursing staff, once our psychiatrists had approved it. The nurses would sometimes take us to the hospital Starbucks to get a coffee and to sit outside. Fresh air and sunshine is so important to a person healing from mental illness. Being trapped inside, out of the sun can make depression worse. As well, we were getting to walk and stretch our legs. Being trapped in a small unit with locked doors can make you go stir crazy. It was such a gift to get a coffee and feel like we still belonged in the real world.

4. The staff were compassionate and wanted to be there.

Even though the staff on this unit worked hard, they built report with us. They would spend time with us, getting to know us. We could ask them anything and there would be no judgement. I never felt like my words were going to be twisted or used against me. Multiple times, I came out of my room and was feeling suicidal. The nurses would get me a lavender eye cover, rub my back, talk to me calmly, put on music, turn out the lights, and sit with me until I felt better. They never made me feel that I was “crazy.” They talked to me as a person and treated me with dignity. The nursing aides would help some of the women with hair, makeup, or do there nails to help them have a more positive outlook. They considered these things to be vital to improving the overall sense of self and healing the patient.

5. The medical team was individualized.

There was only even one psychiatrist and/or her medical resident present. They would come meet with you in your room each morning and do a full assessment. They wanted to know how you were feeling about your treatment so far, how the medications were helping or hurting, how they were going to proceed, and what the rest of your stay looked like at that point. I felt that I was a huge part of my own treatment. Family could come in to meet with the doctors or my doctors would call my family own their own and speak with them about the changes they were making and why. It really helped my spouse to be aware of what was going on and to advocate for me, when needed. If the side effects of the medication became too much, I would simply get the nurse to page the doctor and she would call back shortly.

6. Therapies were both group and individual.

Each day there was group therapy, where a certain topic pertaining to our mental health was discussed. They wanted us to reflect on how we had gotten to the place we were in our mental illness. That life choices, personality, and circumstance sometimes lead to becoming mentally ill. We weren’t victims with no hope. We had things we could do to help ourselves and changes we needed to make, if we ever wanted to be healthy again. There was also individual counseling each day in the rooms. During this time, family members could be invited in to participate in the discussion. That way, family would see things they could do in the future and how to help. It gave my spouse hope that he could do something, that he could be a part of my healing.

7. They had daily classes to help build coping skills.

We worked on art projects frequently, as these are really effective in calming anxiety. The repetitive movements are soothing to the brain. We used little electronic devices that help you learn to bring your heart rate and respiratory rate into alignment and can be used to stop an anxiety attack. During spiritual time, if we wanted, we met with a chaplain and discuss how our illness was effecting out faith. We would walk through a labyrinth in the meditation garden to reach a clam meditative like state and have personal reflection time. We had yoga as an option a few times a week. It was done in the dark with soothing music and lavender. We learned how yoga could help us relieve stress. When we left, I felt like I was given skills that would help me cope at home.

8. There was a daily schedule so most of your time was used efficiently and we wouldn’t become bored.

We ate breakfast and our other meals at the same time everyday. The were usually two morning session therapies and two afternoon. We had occupational therapy, counseling, an exercise class, yoga, spiritual counseling, and four hours or more of family visitation each day. We were, also, encouraged to spend lots of time together. These women and I became friends and allies. We were all in the same boat. Though we were from different walks of life, there was no judgement. Because we all had the same mental illness, we could talk about what medications were working and how they were helping. We could see the changes in each other and encourage one another.

9. Sleep was guarded each night.

They were very strict about sleep. As sleep is vital to mental health and a lack of sleep can signal that something is wrong. No phone calls were allowed, no visitors, and no doctors visits from 9pm-8am. They gave us medication to help us sleep, if needed, and encouraged good sleep hygiene. Getting adequate rest was one of the most healing components of the unit.

10. They let your family and your babies come and visit.

Family time was such a joy. As you got better, they would even give you off unit passes. You were actually allowed to leave the unit with your family for an hour at a time and see what it would be like to start transitioning back to the outside world. Mommas were not completely separated from their babies. Learning to cope with taking care of the baby is so vital to healing. As well, bonding can be difficult during post partum depression. They wanted to promote our bonding with our babies. Finally, they promoted breastfeeding as long as the medication allowed, and they had a psychiatric lactation expert on hand to approve medication changes, ensuring that our medications were safe for baby.

Overall, my experience on the postpartum unit saved me life. I needed help, and because of receiving such quality care, I returned home healthier than when I left. This is not always the case with mental hospitals. Many leave the person feeling more wounded and marginalized than when they entered. We must see change in mental health care in this country. People with mental illness matter. Than are not less than. They are human beings, with rights. Rights to proper and safe medical care. Please be their advocates. Reach out to people in your life with mental health issues and be an encourager. Be a part of their healing.

Tales From the Psychiatric Ward – article 1

I have decided to start interjecting poems, letters, journal entries, and life updates as they come to me. Today, is one of those days. I would like to take a moment and reflect on my time in the psychiatric hospital. I will later share more details of my experience, along with journal enteries. My time in general population was traumatizing, and I would like to shine some light on the state of mental health in America. It can lead to people not seeking the treatment they so desperately need. I will contrast this with my experience in the Post Partum Unit. It, by contrast, was a great experience that led to deep healing. There is a need for reform in the healthcare sector, when it comes to addressing mental health issues. I hope to shed some light.

10 Things I wish I had known about the psych ward before I went:

1. If you are transported to the psych hospital, it may take place by police car rather than by ambulance.

Many of my friends in the hospital had been brought in on recommendation of their doctor. They were upset and shamed by police car transport, rather than by ambulance, as you would be for any other illness. They felt like criminals instead of people with mental illness.

2. When you enter the hospital, whether by choice or my force, you surrender many of your basic human rights.

You are locked in most units. This is not surprising, they don’t want you to escape and harm yourself. You are not allowed to wear any clothes that have any strings or bands. You can not even have shoelaces. You do not have freedom of choice. You do not have privacy. You do not have control over your own life. I was even denied the ability to pump my breastmilk from my engorged chest. They threw me a bucket and a warm towel and told me to hand express. The nurse shamed me for even wanting to breastfeed my baby. The staff was required to let me pump, after my husband made a phone call. I was told I was receiving special treatment, as I was led to a room with vomit in the sink and bloody gauze on the floor, while a nurse watched my every move.

3. The rooms may indeed be padded. You are often under video recording. The rooms don’t lock.

In the psychiatric ER, which was worse than a general population floor, the bathroom was in the middle of the room and had no lock on the door. The floor was cooed. So, at any point, a man could have walked in on me. I had to wait to go to the bathroom, until my husband was with me and could watch the door. The walls were padded. There was a camera watching me at all times.

4. The units are typically cooed with multiple diagnoses on the floor.

My floor was cooed and all mental health disorders were contained in the same space. So, I was placed in care with people withdrawing from drugs and those with severe schizophrenia. There were no locks on the doors, and this really concerned me. This was especially true, when I was showering or sleeping. I was made to feel that I was being paranoid and that my concerns were exaggerated. They assured me they rounded every fifteen minutes, I lay awake at night wondering what could happen to me in fifteen minutes.

5. The staff is overwhelmed by their patient population and often jaded.

The nursing staff can be short and uncaring at times. The appointments that I had with my doctors were short and/ rushed. It felt much like being in a court room on trial, as I entered the room with one doctor and eight students on one side of the room an myself, alone, on the other. I was asked to open up and share my story. Midway through my explanation of what I was feeling, they cut me off and told me to go. I had no input into my plan of care. I was not even told, what was going to happen as they changed my medications or what side effects to watch for.

6. The doctors may take you off all of your meds at one time.

The first time I had a spike in anxiety, I went to get my anxiety medication I had depended on for weeks. I was told that all my medications were removed from my treatment plan with no new medications in their place. When I started crying and went to my room, I was told I was overreacting. I was treated as if I was out of my mind for being anxious and stressed in this environment. It was held against me as I competed to prove my sanity.

7. You have a roomate. This can be a good thing or a bad thing.

The only person you are ever really alone with is your roommate. While mine was kind and helpful, she was also a frequent flyer and highly unstable. She told me she could see how much pain I was in and was going to lay hands on me to heal me. My husband asked to me to tell her not to. However, I was so scared to upset her, as I slept alone with her, I would have let her. Luckily, I was transferred off the unit before this happened.

8. Family can only visit a few times a day.

The schedule allows for family to come at certain times of day. Therefore, there is a lot of alone time. Lots of time to get stuck in your own mind. Lots of time to become nervous or paranoid. Your only choice, besides staying completely to yourself, is to befriend others on the unit. However, it can be dangerous to your safety to befriend the wrong person. As well, you are never sure who you can trust. In a psychiatric hospital I trained in medically (I was a Pediatric Nurse Practitioner), a woman punched out a light in the ceiling and tried to use it to slice her roommates throat.

9. Everything you say can and will be used against you.

Every question you ask, the frequency with which you ask, the tone in which you speak is being examined. They are making a case against you from the time you enter. The chips fall in favor of you being really sick or needing to stay longer, rather than in your best interest or towards assuming the best in you. You can not speak freely without consequence.

10. The classes they offer during the day are all but helpful.

The classes are often about how to reengage with the real world and go back to work. AA is often a component of course work as well. There are few, if any classes, on coping skills. There are not exercise classes to help the patients positively direct their energy and lower their ability to become anxious. They aren’t talking about how you may feel about your illness, or how the world will view you when you get out. There are group therapies but little individualized counseling.

If we want people to actively seek mental health treatment, it needs to become safer. People need to feel cared about and treated with respect. The caseworkers and medical staff need to be working in favor of the patient, not with biased. Patients need to feel safe and cared about. They need to feel they have a fair shot and be prepared to reintegrate into the real world. The cycle of treating mental health patients as subhuman can not continue. We need to be investing financially into research for better medications and into improving the facilities and care. Insurance companies need to be required to cover all mental health drugs. Most medications are very expensive, and are partially covered or not covered at all. Mental health drugs are so hard to tailor to a person. What works for one person may not work for another with the same diagnosis. Therefore, people with mental health issues need to have full access to all approved drugs. If we want future generation to be better than we, we need to make change.