Monday, December 25, 2017

My Family's Experience During and After Illness

I have been thinking about this as I have been recovering from my most recent severe depression. These are important questions that often get ignored as the focus is always on the "patient." The reality though is that while I am the identified patient and I was the one who was suffering in a way that no one else was, my husband and daughter struggled with being a part of our family where illness has been so prominent for the past 4 1/2 years.

**What happens to the caregivers of those with a mental illness? How does mental illness affect the immediate family of the one with the illness?**

My husband was constantly on guard and wanted to support me and most importantly our daughter. He was the one who did the physical activities with our daughter such as taking her to birthday parties, synagogue, play dates, etc. He was constantly "on" both physically and emotionally without any rest or break to the point of exhaustion.

Our daughter coped relatively well until last year in first grade. She exhibited extreme anger when she did not get her way at school and could not process disagreements for what they were and would become physical as her immediate response. These behaviors rarely occurred at home. We were constantly in meetings with the school counselor and the learning support specialist to navigate and help our daughter's difficulties. At the time it was not clear what the precipitant was and while we did think some of it was her responding to my constant illness, it was such a difference from her "normal" behavior, there was concern there was more to it. It was this year that we realized it was due to my being so ill and emotionally and physically detached from her. Her anger was her way of trying to cope.

So where does that leave us now, not only as individuals but as a family unit? We have always referred to ourselves as a "team" and that could not be more true. I think that those who have not experienced a direct experience with a family member with a mental illness, or any illness for that matter, may not understand the gravity of what happens during and after the family member's fight for health. During, there are constant issues for everyone, individually and as a family. Our family changed into individuals fighting for ourselves and each other, to be well and to hold on to that. My husband was tortured by my being so ill and felt extremely helpless. He watched me fade away in every possible way: his love, his best friend...his partner for life. My daughter desperately wanted to connect to me and there was not much she could do to feel that connection as I simply could not return it in the way I wanted to or she wished for. Our house felt like a pressure cooker, ready to explode at any moment.

It's been a few months since I began to feel better from my most recent episode and I feel better than I have in years. I think more clearly than I have in my entire life. I am re-connected to my daughter in a physical and emotional way that I missed more than anything. She actually emotionally regressed a bit in August just as I was becoming more emotionally present and it is clear that she was scared. She must have been worried if this would last.

My husband and I are in a process of re-connecting. Although I've been the ill one, I now feel like I'm higher up than he is on the scale of feeling well. He has been seeing a therapist for what he describes as his "PTSD." He is still trying to take in my health and not panic if I have a bad day, even though he fully understands that we all have bad days. He is in a word...terrified. He has watched me become ill, severely ill, four times within the past 4 1/2 years and therefore is completely terrified as there could be another episode, so I understand that he has every right to feel this terror. While I do not wake up each morning wondering when or if I will become ill again and am able to be in my life, he is not there yet. If I am irritable, he asks what's going on and I have to work on not snapping at him telling him, I am simply irritable...I am not becoming sick again. People feel irritable at times. It happens. I know I must work on my patience and respect his working through. I cannot even imagine what this has been like for him as my "caregiver."

Not everyone may know or understand this part of recovery and how it is not simply about the patient. I realize my illness did not only affect my husband and daughter but also our family and friends who wanted to help. I chose to focus on my husband and daughter here as this has been our 24 hour a day constant existence. I hope that others can take in how much of recovery involves the family system and is certainly not neat and simple. When I wrote in July, "Welcome Home, You're All Better?" my focus was on the mere fact that just because I was discharged from the hospital, it by no means inferred that I was all better. This is an ongoing process that may take several more months.

I do hope that others may have a better understanding of how my family is experiencing this process and, yes, we are almost entirely focused on ourselves. Some may say that we are too narrowly focused on ourselves and not necessarily spending more time with other people in our life who are very important to us. All I can say is that this is working for us and we must continue to heal together. Honestly, we have been to hell and back and not only are we entitled to time together, we simply deserve it.

Sunday, October 29, 2017

The 11 Miracles of My First Jewish Women’s Retreat

It was two years ago when I planned to go to my synagogue’s women’s retreat and I had to cancel due to treatments for my depression. I was devastated. I was so excited that my time had come to attend this women’s weekend away.

In one word, I can sum up the experience I had this past weekend: miracles. There were so many miracles it is difficult for me to begin. I met a group of women, most of whom I did not know. I was given the gift of connecting and getting to know new people in my life. There were 14 of us, including my amazing close friend, our Rabbi and leader.

1.     The first miracle was meeting a woman who I carpooled with, whom I had heard of but never met. I instantly felt a warmth about her that was so inviting and we had non-stop conversations the entire ride.

2.     The next miracle was meeting these women, doing fun icebreakers that you do when you begin a retreat. I learned names and was proud of myself for remembering them so easily (I do have lingering memory problems from ECT-electroconvulsive therapy).

3.     The following miracle was meal times. While the food was excellent and we all enjoyed it, it was a time to chat, laugh and continue to get to know one another. Each of us never sat in the same place which helped to foster our relationships. I enjoyed that time immensely.

4.     The praying that we did together, as one community, was not only filled with warmth and feeling, it was personal. I felt more connected to myself than I ever have in my life. I am not exaggerating at all. I sang as part of this amazing community of women and prayed with them and felt both completely connected to them while at the same time, connected to myself. It was a true miracle to experience this.

5.     I believe there is a blessing in sharing oneself with another human being but I also believe there is a blessing and an emotional wonder that occurs when women share themselves with each other. The strength of 14 women sitting in a room together, whether eating, praying, singing, laughing, hugging, etc. is a miracle, not only in its occurrence but in the actual experience of it.

6.     Shabbat afternoon we had free time with a few options of activities, if interested. There was a quiet hike option and a talking hike option. While I thought the quiet hike option would be nice, I felt it was not what I needed. I had been so talkative already during the retreat and I did not want to hold back! The group of us walked, talked, shared and laughed and it was wondrous. The perfect weather along with the beautiful foliage added a natural element that was not lost on us. More connections were made between us and amongst us and it was indeed another miracle.

7.     By Havdalah on Saturday night, our group was quite solidified. Arm in arm, we did Havdalah in the darkness, led by the light of the candle and I was tearful. These women became my weekend family and it happened so quickly. I thought how beautiful the moment was but also how incredible it was and how powerful women are in terms of connecting to one another. I felt blessed, again, and acknowledged this miracle in its moment.

8.     The miracle of fire came on Saturday night when we had our bonfire (and smores, of course!). We sang songs, mesmerized by the flames of the fire and it was fun and a wonderful way to share our last night together.

9.     Sunday consisted of praying, using spirituality, as we had been, as an individual and as part of a community. It also consisted of reviewing and wrapping up this gift of a retreat. We shared more, questioned one another, exchanged thoughts, laughed and cried. It was a miracle to feel complete as we marked the end of the weekend, not just as a group but as individuals. I could feel it and I am sure the others could as well.

10.  As I hugged each woman goodbye, I smiled and felt connected, held and excited to see them again as we had already begun planning future women’s groups for study and comradery at our synagogue. I thought of how it is usually sad to say goodbye after experiencing something meaningful, but I felt at peace, quiet and whole. I felt ready to return to my husband and daughter and the chaos that is life. That was just another miracle—the ability to be able to move on because of the experience I had. I was given strength and could use that strength to move forward.

11. The miracle that was ongoing from the moment I arrived at the retreat center was my presence. I do not mean that my body was physically there for the weekend, rather the fact that I was present, as in my mind was centered and able to accept and experience each aspect of the weekend. I was focused, thinking clearly and emotionally open to anything. Prior to this weekend, I do not believe I have ever experienced this in my life.

My physical body endured too much these past few years of intense illness: ECT (electroconvulsive therapy), TMS (transcranial magnetic stimulation), medication trials and ketamine infusions. My body continues to cope with memory issues and word gathering difficulties due to the ECT. The fatigue, nausea and other physical side effects and consequences of these treatments emptied my body and not in a positive way. This weekend fed me and filled me. My slightly broken body was given something that has been missing for some time. My stomach, heart, legs, neck and head were given breath, love, peace and ease and my body has not had any of these internally for years. One weekend made this happen. My body was healed in a way I did not even know was possible.

The significance of all that I gained over this weekend is not lost on me. This will be the lingering (and I hope everlasting) miracle of this significant weekend. The remarkable women I connected with, my dear friend who led us safely and steadily -- and me – these are the miracles that I hold as I reflect in this moment. May each of these weekend retreat miracles stay with me, in my heart and in my soul.

Thursday, October 12, 2017

Quick and Meaningful Update

I look in the mirror and see me - yet at the same time, I am not sure who I see. There is strength that I still don't comprehend - it stares back at me, waving at me, doing anything it takes for me to acknowledge it.

A woman looks back at me, slightly worn from enduring severe pain, yet she appears fierce and courageous.

A woman looks at me with tears falling from her eyes - completely aware of every step that was taken to get here.

A woman looks at me with such power and control I turn away for a moment unsure of what to do. When I look back, her face is closer to mine, powerful and genuine.

I look in the mirror and I see me - a woman with strength, who is fierce, courageous, powerful and genuine.

I am on both sides of the mirror, reflecting from one side to the other - so close - maybe one day soon we will be one.

*I have come so far but I am not there yet. I am very happy to be where I am now in my recovery. It is a miracle and a blessing. Intellectually I know I am all of the above adjectives...I need more time to feel it and believe it. I never would have characterized myself with these adjectives so to know it on any level is a huge step forward. I am proud of myself.*

Monday, August 28, 2017

Recovering from Major Depression and a Bad Day Do Not Mix Well

I did not sleep well last night after working a full day and thinking about my baby starting 2nd grade today, so I must begin with that. My recovery from my latest depressive episode has been what is classified as "normal." A few good days and then a bad one. A few good hours and then a few bad ones. Today has been what I would characterize as bad. I was exhausted when I woke up but was so enthusiastic to share in my daughter's excitement to go to school.

From there I had to bring her medications to school and when I walked in the office I completely forgot the nurse's name even though I have known her for a couple of years and have been in touch with her quite often during the years. I could not believe it. I remembered it once I left. As I got to my car, I dropped my phone, which happens often, only this time the front was completely cracked. Fantastic.

I stopped at the supermarket for a few things and saw someone I know but, again, I could not remember her name so I pretended I didn't see her and kept walking.

From there I went home and took a walk thinking the fresh air would help. I heard my name from someone walking toward me and she hugged me and we said hello. I had no idea who she was and after a minute of talking and figuring out who she was, I could not remember her name. In fact, it took 10 minutes more for me to think of her name. I felt terrible.

I had time and decided to get a manicure since I had money from a discount to use. That went well. Then I came home and read an email from the school nurse that the doctor's orders were not with my daughter's medications. I did not notice as I thought my hubby had put them in. I then faxed them over to her. After that I went to yoga. I was able to focus on myself with the intention of being nice to myself. That was a very good hour. I then went to the Verizon store to deal with my phone. $149 later and I will receive my new phone tomorrow. Got home and took in the mail. I opened a plastic package with a scissors and hit part of my nail and therefore ruined the manicure on that finger. I started to cry and yelled out loud how this day sucks. I wasn't planning on leaving the house again for the day but I went back to the nail place and they fixed the nail.

I am home now and I am not going anywhere. I am DONE. What is the point of me sharing my bad day? Everyone has bad days where it is as if everything that could go wrong does go wrong. There are feelings of frustration and exhaustion. This is a lot harder for me to tolerate right now. I am exhausted after yesterday and last night so that added to my difficulties today. The 6 Electroconvulsive Therapy (ECT) treatments I had in July have brought on those cognitive side effects that can take months to decrease in severity. I have trouble finding words at times and my memory is impaired (cue the difficulty with names today). These frustrate me to no end. The other "little" things like breaking my phone, having to take time to fax medical forms and ruining my manicure are just those dumb annoying things that happen. Think about how annoyed you would be if those "little" things happened to multiply that by about 1000 - that is how I experienced those "little" things today.

I have said this before and I will say it again: recovery from a major depressive episode is not a straight line and it can take months. There is no question that I am feeling better and functioning better but there are days like today that remind me to take it easy on myself. It also reminds me that I should not be filling my days off from work with too many errands. I need to rest and relax. I am able to do that now without feeling complete anxiety and I must do this more. This is not up for discussion. If I do not do this, I am simply not helping my recovery and that will not benefit me or my family.

So, it was a crappy day and even though a lot of tears were shed, I made it through. I can't wait for my daughter to come home from her first day of school and to hear every detail. I also can't wait for my husband to come home so the three of us can have picnic dinner while watching the Food Channel (my daughter's latest obsession!).

Tomorrow is another day. Tomorrow I vow to take care of myself a bit more than I did today. Tomorrow is a brand new day and I will take it on with more self-care and more patience.

Friday, August 18, 2017

What's Good for the Body is Good for the Brain?

I have sacrificed my body for the sake of my mind and I have mixed feelings about it. I have taken medications to combat my depression since I was 19 years old. They have either helped me feel better or they have made me feel nothing or they have given me stomach issues, a severe dry mouth, headaches, anxiety, irritability, insomnia, weight loss, etc. It has truly been luck of the draw. Additionally, I have had treatments that were quite invasive and terrifying at times.

ECT (Electroconvulsive Therapy):  I began ECT three summers ago while inpatient on a psychiatric unit. I was as scared as I have ever been about anything as I began these treatments but I was desperate to feel better after suffering for months with a severe major depressive episode that was medication resistant. I did 24 treatments over the course of 5 months and it brought me out of my depression and kept me well for several months. Unfortunately, another major depressive episode took over which prompted another course of ECT. I had 21 treatments over the course of 5 months and was well for a few months after this. The aftermath of having ECT consisted of short-term memory loss where I was not be able to find the words during conversations and would think a thought only to forget it seconds later. This went on for years and while it decreased in severity over time, it still lingers. Additionally, the experience itself of having ECT has traumatized me, not because I received poor treatment, on the contrary my doctors and nurses were stellar and I always felt safe and cared for. What was traumatizing was going under anesthesia for each treatment and seeing other more severely ill patients. These memories linger and there are times when I need to discuss it with my therapist in order to move on.
I also underwent 6 more ECT treatments just over a month ago which was prompted by another psychiatric hospitalization as a result of my 4th severe depressive episode within 3 years. My memory issues and word-finding difficulties resurfaced but not to the same extent as in previous treatment cycles.

TMS (Transcranial Magnetic Stimulation): In the fall of 2016 I began a new treatment during my third major depressive episode which does not requite anesthesia (bonus) and allowed me to drive myself to each treatment. Magnets are used while pulses knock on one's head for about 40 minutes. I underwent treatments five days a week for 6 weeks and then had maintenance treatments before finishing after a total of 8 weeks. I would sometimes have mild headaches after a treatment but otherwise I did well. I began to feel better after 4 weeks of treatments and was brought out of this 3rd episode. Unfortunately after only a few months, I was overcome by another major depressive episode. I began another course of TMS but after a couple of weeks of treatments my thoughts started to change and not in a positive way. My therapist noticed and after consulting with my psychiatrist it was deemed in my best interests to stop all TMS treatments.

Ketamine Infusions: Directly from there, I began ketamine infusions. I began with four treatments which consisted of receiving an IV infusion for 40 minutes. I ended up having 6 treatments where the one positive effect was feeling more focused but they did not help my mood. They also were emotionally painful during the treatments as the medicine heightened all of my negative thoughts and feelings which resulted in some traumatization. After my last infusion I was immediately hospitalized on the psychiatric unit. That's when I agreed to a few ECT treatments as I had to wait while my old anti-depressant was being washed from my system before starting my new anti-depressant which comes from a class of medicine I had never tried before due to dietary restrictions. Luckily the form of this new medication is a patch that I change daily and because it is transdermal and it is a lower dose I do not need to worry about the food restrictions.

So what has my body been through in just that last 3 years? I have had numerous induced seizures, magnetic pulses to my brain, a hallucinogenic and many medications all of which have affected my brain and every other organ and part of my body. When it comes to psychiatry there are many mysteries that remain but I am sure of a few things most of which involve having the best and most appropriate care:

1. I have received the best care possible from my first therapist in New York City to my current therapist whom I have seen on and off for well over 20 years. My current psychiatrist and the doctors, nurses and social workers who helped and guided me these past few years are simply the best of the best.
2. My body has undergone a lot and there have been consequences, medically and emotionally, but I ask myself was it all worth it and I honestly can't give a straight answer. I wish I responded easily to medication and I wish I did not have to have any of these invasive treatments but the bottom line is this: there is no cure for depression. What choice did I really have, especially when I have a husband and daughter to consider, not to mention myself and the rest of my family and friends?
3. I can't say I would do it all the same if I had to do it over but I would still trust my doctors just as I have over the years. Even while at my sickest, I would only tolerate excellence on the part of those who treated me. My therapist who probably knows me better than anyone else is the best of the best, hands down, no question. She is highly intelligent, witty and can read between the lines like no one else. With each depressive episode over the past 3 years she has cared for me in the most humane and attentive way as one would want to be cared for during such a threatening illness. The nurses and doctors in the ECT suite were warm, friendly, smart and always tried to create a sense of peace while I was internally fighting my anxiety. The psychiatrist who follows my care whenever I am inpatient is quite brilliant but he is down to earth and he not only works with me, he considers me as a team player. My outpatient psychiatrist listens to me and takes into account my experience and never takes over as the "expert." I would not have it any other way.

While every inch of my body and being has been through more than anyone should have to endure I am now recovering and as I am I am reclaiming my body and soul in a way I haven't before. I am taking yoga classes that incorporate mindfulness and after only a couple of weeks, I am starting to feel more in charge of my self, more like the captain of my being. It makes me feel strong and forces me to stay in the moment when that can be very difficult as I try to deal with thoughts and memories of the past 6 months of a horrific illness. By no means am I saying that yoga is my savior but for now it feels good at a time when not much has felt good. My body and brain have suffered unimaginable terror and it is now time for a well deserved break.

I can't say what the future will hold in terms of my depression but for now I am taking over and I am the one making the decisions regarding my being. This is what is good for my body and my brain.

Wednesday, August 9, 2017

Caution, Caution

Five weeks later, after a week in the psychiatric unit and several ECT treatments and new medication, I have begun to feel better. What exactly does that mean? Well, for one thing, I am thinking more clearly than I have in about 6 months. Thoughts are clear and follow a pattern and for the most part are not negative toward myself. I can also be and feel more involved in conversations and feel present in social situations as well as at work. Time will go by and instead of me feeling misery with each passing second, I surprise myself when hours have gone by without my tracking them. My mood is definitely better which was sparked by the clearer thoughts. My mood is more reality based and not as negative toward myself. I can be "with" my husband and daughter and really be there. I know they both feel the difference, just as I do.

With this renewed sense of clarity though comes with it a review of the past 6 months and realizing and recognizing how ill I was. Thoughts occur to me that are deeply painful and there are moments I need to write them down as part of processing them. My therapist says I will need to let them go but since it's only been a couple of weeks of beginning to feel better, I need more time. I am not ready to let go yet as it is important that I process certain thoughts and occurrences in order to be able to let go and move on. Because I was so ill, it was difficult to understand or even acknowledge my thoughts when I was in it. I knew I was quite ill but at the same time it became my "normal." As I come out of it, the realization of how confused and painful my thoughts were is overwhelming at times and I need to let myself process, cry and mourn. I do feel I am in a period of mourning--the time that was lost and the reality of what this horrid illness did to me, physically and mentally, represents a huge loss.

It is a lot to absorb and I think it is vital to those around me to understand that just because I have had an upward swing these past 2 weeks, and I do believe that will continue due to this wonderful new medication, I am currently enduring something very deep and existential the likes of which I have not experienced before and if I did, I simply do not remember. There is no magic act where I have been cured and all is wonderful now. I have to find my new normal, just as I have after each of my other episodes of severe depression. This is a true process and I know I am on the right track, I just think it is important for those around me to understand that this process is ongoing. I may not have those ongoing feelings and thoughts of harming myself but I am not cured. They sometimes lurk in the background and luckily I now have more strength and understanding and can talk to my therapist and psychiatrist about them. I am very well aware that I am at risk and luckily I have a husband who is on guard and a therapist and psychiatrist who also are taking stock of what I have been through and where I am at now.

It is a good place to be, certainly a better place than the past 6 months. I have endured treatments that were invasive and, at times, terrifying. Transcranial Magnetic Stimulation (TMS), Ketamine Infusions and Electroconvulsive Therapy (ECT) held their own stress and hope and represents how I have and will continue to jump through those hoops that my therapist, psychiatrist and other doctors at Yale present to me. I am a good patient and I always have been. I listen and I advocate, even at my sickest. It is a true collaboration and I consider myself extremely lucky to be part of this amazing collaborative team; not only that but I am considered an important part of this team. I know many people who do not have this experience and feel on the periphery of their treatment team which, in my mind, is a sin. I know how lucky I am and would not be where I am now if I did not have a respected place within my own team.

I will give myself the time needed to process the many thoughts and memories of the past 6 months that come up. I will talk things through with my therapist in order to understand and course through these memories and thoughts so I can let them go. I know I will need time to get there and I know I have the support of my family and friends as well as my therapist to get me through to the other side. I will always have memories: certain smells and sounds may bring me back to those moments immediately before I was given anesthesia for an ECT treatment. I just need to allow them and talk about it in order to process it if I need to and/or let it go. This is easier said than done right now which is why I will repeat the importance of doing this on my own time. The past 6 months have been pure hell and has affected my family and friends but as my therapist has said to me numerous times, it affected me the most and the worst: I was the one with the severe depression. There is much to process, feel and mourn and I know I will get to that next stage of letting go within my own time frame and with the support of those around me.

Friday, July 14, 2017

Welcome Home! You're All Better?

I have been home from the psychiatric hospital for a week now and, at times, I am overwhelmed by very small things. It is a wonderful thing to be discharged from the hospital particularly when there is a good plan in place and one feels safe. That was certainly my experience. To be honest, though, it is not easy. One may think being back in the comfort of one's home would feel soothing and relaxing but for me, I have not consistently felt that. I certainly sleep better in my bed with my life partner by my side and I certainly like not being checked on every 15 minutes. The stresses that brought me to the hospital are still there although dulled. I am still experiencing weird occurrences of remembering different aspects of being in the hospital as brought on by smells or sounds. I need to be careful when that happens not to allow it to take over my thoughts in those moments as it will not accomplish anything positive.

I am still not feeling great so I still need to monitor my symptoms. That can be difficult at times. There are times when I feel like everyone in the entire world is texting or calling to check on me and it feels too enormous to respond. That then brings on tremendous guilt and its own version of negative self-thoughts. The truth is nothing about this is easy for anyone involved in my life.

My therapist had used the term that I needed "a break" and classified that as me going to the hospital. I told her this week that I could not continue to describe my hospitalization as "a break" as it was not as if I took off a few days to go to Canyon Ranch (I wish!) or took a few days at the beach. In my mind, it was not really about taking a break but rather keeping me safe. That was the bottom line and the reality of my hospitalization. That is the new language now that I will be using. While I may have also needed a break from reality, the intention of going into the hospital was to keep me safe, simple as that. I talked with my husband about this language and he agreed. I am learning a lot right now about how important it is to let others in. It was important to tell my therapist that I did not agree with her language and we were able to talk about it and come up with a solution. Also, just as important, I knew to bring this to my husband's attention in order for us to be on the same page. Semantics can carry a lot of meaning and it is so important for me to be understood. It is a very empowering feeling.

What would be helpful right now? Certainly hearing from my family and friends is important, I just may not respond if I am not up to it. It is not personal. I need to let others into my world a bit more as I have been unable to do so for months. This is very hard for me as I have not felt others "with" me in that emotional way in several months as my depression has fought against those feelings. Cut me some slack while I find my way. Yes, it is great to be home from the hospital but there is still a lot for me to acclimate to socially, emotionally and rationally. I need to try to give myself a break, too, during this process and for me that is like delving into the unknown. It scares me but I can intellectually see how important it is to my ongoing recovery.

My new medication is holding a lot of hope and during this waiting game of a few more weeks as it kicks in, I have chosen to have a couple of ECT (electroconvulsive therapy) treatments to help me get through. This was not an easy decision to make and although I originally told my doctor in the hospital I would not have more treatments as an outpatient, I came to it on my own once I was home for a few days. I felt empowered and terrified making this decision as there is so much anxiety for me before each treatment. It was helpful though while I was in the hospital and I need to give myself every opportunity to feel better. As my very eloquent therapist said to me this week, "it's enough already!"

Yes, it really fucking is.

Thursday, July 6, 2017

Hospitalization: One Week

A week ago today I went for my early morning ketamine treatment at the hospital and never left. The plan was set in motion last Wednesday. I needed to be hospitalized and I needed to be safe. I was not thrilled with the idea but was the one who made the call to push things forward.

I met with the doctor who always follows me when I am inpatient and we came to an agreement: I would have 3 ECT treatments before beginning my new medication which I could not begin until today. I had the ECT treatments which brought back a level of anxiety in me I would not wish on anyone. They seemed to help my mood though so I am holding on to that positive. The first ECT was difficult though as ketamine was used as the actual anesthetic which I had never had before. I had difficulty walking after the treatment and even required 2 counselors to help me in the bathroom which was one of the most humiliating moments of my life. I was shaky all day but was told that they would go back to using the anesthetic they used in the past for future treatments.

I went to groups, talked with other patients, counselors and doctors and took care of myself. It was a difficult 7 days. I was away from my daughter, whose only understanding of me being away was that I went somewhere to get new medicine for my depression. I missed her more and more as each day went by. My husband visited as did my parents.

Evenings were the most difficult for me. I felt desperately alone and ached to hold my daughter. I worried about the burden I had become to those I love. I perseverated about these things over and over again.

I knew I needed to be in the hospital and did not waste time going over that. I needed to be in a safe place with little responsibility.

I am home now and very happy to be here. I feel exhausted and a bit overwhelmed. I still need to take things slowly and moment by moment. No extra pressure needed here!

I began my new medication this morning which comes in patch form (MAOI). I pray for positive results. I only agreed to a few ECT treatments to lift me up enough out of my misery in order to hold me until this new medication kicks in. I am terrified of doing more because of my memory issues and because of the great anxiety that is conjured up prior to each treatment. Again, I am focusing on moments at a time right now while I transition back to home life.

I will say it again: depression is a mean and horrible illness and I will continue to fight it with everything I have. I am lucky to have my treatment team in place and my family and friends are right by my side. It will take me some time to thoroughly process the past 7 days and I know I need to give myself that time and opportunity. Honestly, it's a lot. A lot transpired during the past 7 days and while some was inspiring, some was downright terrifying and brought me to a place of pure despair and loneliness.

If you see me, if you want to contact me, just be positive and be supportive. I honestly cannot handle anything more or less right now. Just be real.

Tuesday, June 20, 2017

Ketamine Infusion #6

The past few days have been very difficult. I am almost completely off of my anti-depressant and I feel it (need to go off of it and then wait 2 weeks before starting new anti-depressant). I have been extremely irritable and anxious. I have had brief moments of brightening, especially yesterday when I picked up my daughter from the camp bus stop. As we drove home, I blasted "Dancing Queen" and we sang at the top of our lungs. That was a good moment.

I was definitely not looking forward to today's infusion. During the infusion, I was more "with it" and felt part of my surroundings. When the nurses and doctors talked to each other, I could hear them and felt I was in the room with them. It was the last 10 minutes or so, though, when the tears flowed and I felt alone and terrified. All of the negative thoughts that I have on a daily basis were magnified X1000. I sobbed thinking the terrible things I think of often they were just swirling in my brain all at once: I am a terrible wife, my husband chose the wrong woman to be with, my beautiful daughter is losing out with a mother like me, I do not deserve to feel better, and so on...

I was relieved when the infusion machine beeped signifying that I was done. As I came back to myself, the nurses kept checking on me, cleaning away my used tissues and reassuring me. I felt better as the minutes passed and was happy to be done.

The plan is to have one infusion next week and one the week after, to make up for the two weeks without an anti-depressant. As of this exact moment, I feel better, more aware, focused and my mood is definitely a bit elevated. Of course, I have little stress to fuel my negative symptoms today as I am home and on my own schedule for the rest of the day.

And so it goes...

Thursday, June 15, 2017

Ketamine Infusion #5

I was not looking forward to today's infusion, but again, I am holding on to hope so it was worth it. Today's experience was slightly different. I felt more aware of my surroundings than in my prior infusions but the last 10 minutes or so were similar to before. I cried and felt isolated and paralyzed. I could see the people and surroundings around me but I felt completely separate. That terrified me. Luckily, the nurse was right there for me. Even as the infusion ended and my IV was taken out, I continued to cry, feeling nervous and scared.

As I came back to myself and had something to eat, I felt more stable as my head became clearer. My husband and I then met with the doctor. We discussed my progress and the necessary med changes. He gave us some options and I will be trying a medication class I have not tried before. I left the meeting feeling a spark of hope. I am eager for this change but it involves slowly tapering off of one of my medications and then waiting 2 weeks before starting the new one. The next few weeks may be difficult. It is only now, in this moment, that I see that I will get through this transition...there is no other choice. My therapist and my doctors at Yale are right there with me and even though I still can't feel it, I see them. Their experience and expertise have guided me thus far and I trust them implicitly. Most importantly, my husband is right there beside me and I know I am very lucky.

I will have one more infusion on Tuesday and then the medication changes will continue. I am nervous about the next few weeks, but since I have already come this far, I can make it through this.

Tuesday, June 13, 2017

Ketamine Infusion #4

I had a few days where I felt clearer, more with it and actually part of life. It felt good. I wasn't "cured" as my mood was not greatly improved but it was certainly a difference. By Saturday late in the day, however, I started to feel more out of it and the past couple of days, while I have felt more in touch with my surroundings, I have felt more sad and irritable. I went in early this morning for my treatment and reported all of my updates. I was not necessarily looking forward to today's infusion but the prospect of feeling some relief was my motivation.

Again, as the heaviness hit me, the tears flowed. I became frightened as I felt so alone. While the ketamine enters my brain, it forces me more into the bubble I already feel stuck in. I see everyone around me, hear voices and sounds and can make sense of them, but I feel cut off and as if they cannot see me. I asked the nurse for tissues and she asked if I was ok. I responded asking her, "am I okay?" She touched my arm and said, "you are okay. I am here with you." While that made me cry more, it was the most comforting thing to hear in that moment.

I then started thinking of my beautiful daughter and was focused on her face. I missed her. I also thought of my husband and how much I wished he were sitting with me holding my hand, reassuring me. I thought of the conversation I had last night with my therapist who told me that she and my other doctors are there for me, in it with me. I cried more. I focused on the fact that I would see her tomorrow. I reverted back to thinking of seeing my husband once my treatment was over. I cried more.

The infusion ended and I was relieved. I drank water and ate some graham crackers and watched my blood pressure decrease (the ketamine increases it). I was a bit wobbly as I walked to the waiting area to my husband but was so glad to see him.

I go back for infusion #5 on Thursday and then we will meet with the doctor to discuss long term plans. This will involve medication changes as there are actually some meds I have not yet tried! For now, it is one day at a time.

Thursday, June 8, 2017

Ketamine Infusion #3

Yesterday I had several hours where I was more alert, involved and could formulate and explain my thoughts. My therapist told me I seemed a bit more together. By the early evening though I began to feel irritable and sad. I knew those hours when I felt clearer were a good sign and my doctors confirmed that this morning before they began my infusion.

I was nervous before they started and once it began that heaviness came over me and I felt as if I were watching everything from outside of myself. I began to cry as I looked at the clock and saw it was the time when I would wait with my daughter for the school bus. I did not see her this morning as I had to be at the hospital very early. I cried more when I thought of her and missed her so much. I focused on her face and what it feels like when I kiss her cheeks, her soft, perfect skin. I focused on her smile. I cried harder. The nurse asked if I was okay and I told her I was but I was aware that I felt scared and not okay. The doctor reassured me.

I then thought of how I am such a burden on my husband, daughter, family and friends. I felt trapped in the bed in the room as if this is my life now and my existence consists of being outside of myself. I cried more.

I looked around and all I wanted was comfort and while the doctors and nurses provided it to me, it wasn't enough. I wanted and needed more. I could not feel it. I started to imagine my therapist coming toward me and reassuring me. It felt slightly real although I was not hallucinating. I think I was trying to feel a connection to someone or something. I then cried more, feeling so unsatisfied.

The infusion ended and I was glad as I regained myself. It really is such an odd experience and while it is not terrible, it is certainly not enjoyable. Some do enjoy it, some sob throughout, it depends on the person. I do think it is beginning to help me though and that is all that really matters. I have a life, a beautiful life that I want to live in from inside of myself, not outside looking in.

Tuesday, June 6, 2017

Ketamine Infusion #2

As my friend drove, I tried to be with her in the car in conversation. It was difficult. I felt very anxious about my treatment. I walked into the treatment room upon arrival as they were ready for me. I sat on the bed and shivered as I took off my shoes. The room was freezing! I jokingly complained and the nurse agreed with me. I was asked some questions by the doctor and then completed a self-report about my mood. The IV was inserted and the infusion began. The lights were dimmed and after a few minutes I started to feel that sense of slowness.

It was quiet and aside from the nurses checking on me, I was left alone. While I was fine with that, after a little while, I began to cry. I had so many thoughts in my head which were heightened. The nurse brought me tissues and kept checking on me. There was a point when I had an itch on my head and the process of taking my arm from under the blanket and moving it up in order to scratch felt so slow and odd. I almost asked the nurse if I was okay as if I could not gauge myself. It was a little scary.

The infusion finished and within a few minutes I started to feel a bit clearer. I spoke with the doctor who assured me that crying during the treatment is no indication of whether the infusions will help or not. He said there are some patients who sob during the infusions but a few hours later feel good. That allayed my fears.

It's been several hours since I completed the infusion and I feel tired and sad. I am hopeful and ready to feel sparks of feeling better.

Thursday, June 1, 2017

Ketamine Infusion #1

We drove in almost silence. His hand in mine while he drove. I felt numb and nothingness. We arrived and I felt such sadness. Walking into the hospital, where I have been inpatient and received ECT, I felt traumatized and scared. We took the elevator to the basement to check in and as we walked out of the elevator, the smell overcame me. It sparked my memories of walking down the same hall for ECT. I checked in and then underwent cognitive testing for 30 minutes. I had to remember a bunch of words, over and over again and then remember cards simulating different games. I did not do terribly but I did not do too well.

After they walked me to the room where I would receive the infusion, which happens to be the same room where ECT is done. I had to say goodbye to Ken and his hug and kiss was what I needed. The doctor walked me in but the bed was actually not ready. He led me to the waiting area and I began to sob. Ken had already gone out to get some breakfast and I sat alone. Luckily it was only a few minutes and the doctor retrieved me and I walked in to the room where I received ECT treatments, the room that had the same smell. The two nurses who greeted me were known to me as they also work with ECT patients. That helped. As they hooked me up to monitor my heart rate and blood pressure, I continued to sob. I was so sad and so scared. It felt as if this were my very last hope at feeling well. Doctors came in and out and when the medical director came by, who has always followed me when I have been inpatient, I felt a bit of relief. I told him I was scared. He said the only side effect would be that I would feel better. I laughed. It was typical of something he would say. I was so glad and thankful he came to talk to me.

They started the IV infusion and I clenched the dirty tissues in my hands. After a few minutes, everything felt slow and unreal. The nurses and I talked and it felt as if I could not stop talking. I hadn't been that talkative in months! The doctor came by and said I seemed to be very talkative and he said some people experience that during the infusion. People (nurses, doctors, medical student) came by and talked to me, treated me as a human, supported and comforted me. I could not move my head too much as it felt as if my head was stuck. It was not upsetting just strange. There were some quiet times and I was aware of my surroundings but also felt like an observer of my own experience. Time felt slow but before I knew it, the IV finished and I was done. Within minutes I started to regain myself. I was able to turn my head normally. My blood pressure went down. Then I was released. I will return on Tuesday. I may feel a positive reaction after this one treatment or it may take more. I am trying not to put too much pressure on myself.

As Ken and I walked out of the hospital, the medical director was also walking out. He was glad my treatment went well and it seemed fitting to see him as we left. He is not just a very intelligent psychiatrist, he is such a genuine human being.

It's only been a few hours since my treatment ended. I have eaten and taken a walk on this beautiful day. I am feeling a bit sad right now but I am here and I will continue to do everything in my power to get better.

Sunday, May 14, 2017

A Mother's Day Message to My Daughter

It was dry heaving as the morphine took hold. It was seeing this wet, screaming, angry face. It was sobbing while trying to have you latch on. It was listening to your screaming as I tried to soothe you. It was staying with you in the hospital at 5 months old and worrying that I had damaged you in some way. It was being with you in a treatment room at midnight while the doctor inserted a feeding tube through your nose. It was struggling to teach you to drink formula at the same time as teaching you to drink from a bottle. It was hearing you throw up through the baby monitor and then thinking through how to manage the clean up of you and your crib. It was being with you in the hospital at 8 months old and worrying about your weight. It was worrying about you reaching your developmental milestones. It was worrying about strengthening your legs to be able to walk and it was worrying about your feeding therapy. It was laying with you when you had a 102 degree fever. It was holding you tight while you kicked and screamed when you got your flu shot. It was holding you and reassuring you when you got your ears pierced.  It was talking with you while you cried about an incident at school.

These are the times that truly made me and make me a mother. The love and care came at that first second when I took that pregnancy test and saw two lines. The full heart, warmth, joy and excitement are the easy parts of being your mother. It is the hard times, the times that test my very being, will and strength that really make me your mother. You make me feel humbled, proud and speechless. You are my child and I am your mother.

Sunday, April 30, 2017

Deeper Facts of My Depression

Most people have some level of understanding of depressive symptoms: sadness, hopelessness, sleep issues, appetite issues, etc. There is so much more though that people may not realize.

Firstly, the person with depression may not be thinking clearly, for example, a friend told me how hopeful she is that I will feel better soon and my interpretation of that was that she did not actually care about me. One plus one does not always equal two in the mind of someone who is depressed. My cognition is greatly impaired and while I can be aware at times of this impairment, the thoughts and feelings feel very real to me. It leaves me in a constant struggle internally which is heartbreaking and energy consuming. This is on top of those “known” symptoms of hopelessness, helplessness, extreme fatigue, low appetite and feelings and thoughts of worthlessness.

Also, my experience is that there is no rhyme or reason in terms of the severity and timing of symptoms. Yesterday morning I felt okay whereas this morning I woke feeling a lot of anxiety. Each day is different right now which is also exhausting. I have no idea what to expect.

I also need what I call “babysitting.” My husband does not want me to be alone for a long period of time. While I can understand this from his perspective, from mine it simply means I am needy and weak and have to impose on others when my husband is not around. I feel like a child and embarrassed. I do not like to put people out and I do not like changing people’s schedules in order to benefit myself. I realize this may not sound like someone who is grateful to have such wonderful people supporting her but this is how my cognition is currently running.

I also feel as if every slight and every unfortunate life incident is my fault, whether it be dropping and breaking a glass or tripping and falling. My inner monologue: Of course, these are all my fault and if I weren’t so stupid these things would not have happened.

What my friends may not realize is that the quick text checking in or the quick call is so helpful. Even if I am not talkative in that moment, I know they are there and will be there to help in any way they can. This may not be well conveyed by me but I mean it. There are not any grand gestures they need to do. Just knowing they are there is extremely supportive and helpful for me.

This is my life right now, every hour, sometimes I feel it every second. It is relentless and to say it is exhausting is not giving it the power it has. My negative thoughts can be terrifying at times and only adds another layer to this experience that I am fighting with all that I can.

This is hard. This is scary. This is real. This is more of what my depression does to me and my life.

Wednesday, April 5, 2017

It Really Is What It Is

Relapse, deteriorating, worsening…symptomatic, sick, not well, dip. What should this be called? It came on so quickly, I am simply not sure how to label it and yet it feels like it needs to be labeled as something. It needs to have a name so I can feel some validation of my experience. It’s not a big deal but it kind of is, to me, in my head. Within one week I went from a relatively normal mom and wife, with everyday worries about my family and life in general to a woman with such darkness inside, self-hatred, no self-compassion, difficulty sleeping, eating just to eat and not really enjoying the food, extreme fatigue and hopelessness. Damn, it came so fast. I envision depression as a black ink blot that can fluidly move wherever and whenever it wants. When it wins, which it did as of last week, it is bolstered with more energy and more stamina while mine becomes depleted.

Lessons learned: Last week my husband told me to call my psychiatrist and my TMS (Transcranial Magnetic Stimulation) nurse. Each day I would give another excuse as to why I did not call. Honestly, I thought with each new day that I would begin to feel better. I also did not want this to be real. Who can blame me? It’s been a trying few years and if I were to call this #4 (4th depressive episode within 3 years) it would give it too much power even if that was my reality. My husband now knows he should not believe me when I say I will reach out at these times, because, most likely, I won’t. I am usually not thinking clearly and should not be trusted. He has permission to contact any of my treatment team on my behalf. In a way, it is empowering for us both as he can play a vital part in my treatment and recovery.

I had TMS this afternoon after returning to Hartford from Boston where I saw my therapist. While I felt numb and negative this morning, following my therapy session, I felt a bit more clear about what I need to do. I need to jump on this shit and beat it down. I am worth it and even when I do not believe that, I will still be worth it. My husband and daughter are worth it. I can do this. I can try not to wallow. I can advocate for myself and am ready for a battle with my insurance company re: TMS treatments, if necessary. It basically comes down to the TMS. That is what will pull me back out of this and that will be my ongoing treatment to ward off any further episodes.

So, what do I want to call this? Well, it’s depression and it’s being treated very early on. It could be a relapse or a deterioration but why can’t I call it what it simply is? I have depression. That fits and that feels right. I don’t want to get too caught up with semantics but one thing I have learned from DBT (Dialectical Behavioral Therapy) is the importance of having one’s thoughts and feelings validated. My thoughts and feelings are mine and they are experienced by me. I feel depressed. I am not comfortable calling it my relapse, my deterioration, my dip. It does not feel right for me. There does not need to be any fanfare and I am now doing what I am supposed to do to get better. I am depressed. There it is. That is what it is so let’s just go with that.

Tuesday, March 7, 2017

What Happens in Therapy Doesn't Stay in Therapy

Imagine sitting in a room which is comfortable, sitting across from the same person for years. Imagine doing this once or twice a week for 45 minutes for years on end. Imagine sitting in front of this person and looking at her, noticing her, listening to her. Imagine thinking you have a relationship that, for what it is, is normal. Imagine questioning this person's care and attention over and over and over. Imagine believing what you think about this person, how you perceive this person is normal...reality based. Imagine being blown away 23 years after first meeting this person to realize you never actually were sitting across from her and seeing her, really seeing her. Imagine having this realization over the course of several weeks, maybe months and having to process this intense and emotional realization. Imagine feeling this in your head, your heart, your upset stomach and not completely understanding what is happening to you. Imagine talking to this person, in that comfortable room, and explaining these confusing and amazing thoughts and feelings. Imagine recognizing that what was believed before was not quite the reality. Imagine looking to someone for constant reassurance that what is happening is okay and safe. Imagine seeing someone for the first time after only looking at them for 23 years. Imagine feeling a new sense of safety in that comfortable room and a new sense of calm as well as utter fear. Imagine experiencing something that is slightly confusing yet emotionally amazing at the same time. Imagine feeling uneasy and terrified while feeling emotionally amazing. Imagine feeling as if you accomplished something so big, so important and so vital, not only for this relationship but for others in your life.
Imagine this. Imagine this is what can be accomplished in therapy. Imagine doing the work, hard work in order to get to this point, this point of unknown. Imagine seeing someone as real, positives and flaws and all. Imagine the relief.