On ECT…

12/26/2015     1:56pm

I’ve been wanting to write on ECT for awhile now. It seems everyone has their own opinion about it, even if they haven’t experienced it. I say, unless you’ve tried it shut your face. This is my experience with it.

In case you didn’t know, ECT stands for Electroconvulsive Therapy (shock treatment.) Right, like in “One Flew Over the Cuckoo’s Nest” only not. ECT is used for severe depression when medications and other treatments haven’t worked, suicidal depression, psychosis, severe mania or catatonia. It may seem barbaric but it’s actually quite effective. Antidepressants have about a 30% effectiveness whereas ECT is about 70%.

I started ECT mid-November after 15 years of med changes and 13 hospitalizations. I wish someone had offered it to me sooner. 5 of my doctors worked together to make it happen. Here’s how it happened. I was given the option and information that I could sign only after having it for 24 hours. My doctors made sure my labs were good and I passed my EKG. I was evaluated by 2 doctors and then scheduled for my first session. I opted not to view the ECT video. I’ve seen it before. I’ve had many friends who’ve had ECT so I knew a bit of what to expect and considering I’d rather have been dead the outcome really didn’t matter.

I started ECT inpatient 3 times a week. The night before they give you a red wristband that means you can’t eat or drink after midnight until they take the band off (because of the anesthesia.) I got lucky for my first ECT and had my favorite nurse assigned to me. She came to get me super early in the morning when the ECT dept was ready for me and walked me down there. The nurse there greeted me with a smile and took my vitals. The nurse from my unit stayed with me until it was my turn. Then they took me back to meet my doctor in the treatment room. As soon as I go in, I sit down on the gurney (which is ridiculously soft.) The nurse on my left starts an IV in my left arm, the nurse on my right covers me with a warm blanket, the anesthesiologist is above my head and my doctor is either sitting at a computer on my right or standing at my feet talking to me. Someone puts electrodes on my forehead and right temple. I try to stay conscious as long as possible but inevitably mid-sentence my doctor grabs my right hand, smiles at me and says I’m going to get sleepy. The world gets a bit blurry, shakes back and forth two or three times and all goes black. The next thing I know I wake up in the recovery area. I still have no idea how I get there. When I wake up I feel happy and healthy, they take my vitals and someone gives me apple juice.

While I’m asleep they shock me on the right side and top of my head (unilateral), causing a seizure. In the IV they give me meds to paralyze my body so I don’t shake. Because of this, they breathe for me. They tape my eyes shut and put a mouthpiece in so I don’t grind my teeth. I don’t suggest keeping contacts in if you wear them. I did the first time and somehow lost one when they pulled the tape off. Don’t worry. They do it before you wake up and it doesn’t hurt at all or leave a mark. I have longer seizures than most people. Last week I had my longest yet – 148 seconds. The length of the seizure doesn’t seem to matter as long as it’s at least 20 seconds. Some people have bilateral ECT, which means they get shocked on both sides. That kind of ECT has more memory loss and side effects. They don’t seem to know how or why ECT works. I read an article last year that said it slightly damages the part of the brain that’s overactive in depression. Other sources say it basically jumpstarts the brain or changes the chemistry. Either way, it works.

My first ECT was the worst. They didn’t give me any extra meds because they didn’t know what I’d need. I had no idea where I was or who the people on my unit were. I was crawling on the floor nauseous with a HORRIBLE headache. I did at least remember my nurse, who I’ve known for years. My legs hurt SO bad for several days, which they told me was because they were super muscular and adjusted the anesthesia. They “stacked” my first two treatments – two days in a row. After the first one they started giving me Toradol and Zofran in the IV and I’ve had much less difficulty with pain and nausea.  After the first treatment I felt joy, which confused but elated me. I didn’t know it was possible. I had 5 treatments inpatient and was doing so well that they discharged me without a plan for maintenance treatment. Then my therapist fired me and some other shit happened and I took a hard and fast dive towards death. So I decided to go back to ECT. Now I’m getting treatments once a week.

ECT has not been without side effects. After doing treatments three times a week I couldn’t drive for 2 weeks. Now that I’m doing it weekly I just can’t drive the day of or the day after treatment. About an hour after I wake up I get a headache and feel very nauseous. Sometimes I can stay up and work on the computer or write. Other days I just sleep. I have Tigan to take PO for the nausea. My memory is spotty and my cognition is definitely impaired. I have trouble remembering names, passwords, how to get places. My mind, which is usually chock full of thoughts and ideas, is often pretty blank. This is new for me but I don’t altogether hate it. There are certain things I don’t remember at all. I’ve gotten into arguments with people about things I apparently did but have no memory of. This is frustrating for me. Thankfully at least one of those people understands why. My mind is usually a steel trap. If I don’t remember it, it didn’t happen. But I guess now it might have. I’m learning. It’s like ECT as ERP. I’m learning to accept not knowing or remembering. I so often now hear myself saying, “I don’t know.” I also get very sore muscles for a few days after my treatment – sometimes my neck or shoulders, tongue, back. The soreness seems to travel but doesn’t show up until the second day.

I feel offended when people tell me I shouldn’t be doing ECT or when they hassle me about how many treatments I’m having. They say they’re concerned about my mind or the side effects. They fail to take into consideration that it’s saving my life. I KNOW I’m not the same. I’m aware that my mind is different. I’ve seen how it can ruin people’s minds. It’s not ruining mine. I trust my doctors and God has given me ECT. Maybe not for forever, but definitely for now. I finally found something that actually helps me. I do feel sad more often than usual, but I believe that’s because I’m actually feeling. I’m dissociating less, actually living in the moment. It’s new for me. I think it’s good. I intend to keep doing ECT until my doctors and I agree on stopping. Please don’t try to dissuade me.

If you’d like to talk about ECT, feel free to leave me a comment here or contact me personally if you know me. I’m not up for philosophical arguments but I’m willing to answer questions or help you out. It’s not as scary as it seems. I promise.

This is the Mayo Clinic article about ECT. Mayo Clinic – ECT

© Michelle Routhieaux 2015

Sad

12/25/2015     10:49pm10553833_10154419045254307_1138106686227162752_o

It’s Christmas night 2015. I’m crouched on the floor. The tree is lit, as well as a vanilla candle. My mom and the pets are asleep. I feel sad. SO sad.

Today I woke up at 9am and opened presents with my mom. My brother, nephew and two friends came for dinner. Mom made green beans with bacon, spiral ham, mashed potatoes & gravy, fruit salad and a whole spread of appetizers. We even had a Hershey pie. I went to visit my friend in the hospital and got to see some of my favorite staff. That meant a lot.

I feel sad today. Part of me is disappointed that I don’t feel happy. The other part of me is just grateful to feel. I’m not dissociated. I’m feeling sad. I’m feeling…

There’s a Christmas movie on. I can hear my mom snore. I really hate the holidays. My providers are out of the office until the first week of January. What am I supposed to do?

X- texted asking to try again tonight on my terms, in God’s hands. I told him I’m not sure. He said he’s more sure than he’s ever been. He said some other wonderful things I have no great reply to. I don’t know what to say. Why is it so hard for people to understand that I’m terrified of people? I have strict boundaries and specific fears for reasons I don’t care to share. I’m a pretty private person. And why does he stick around for what little I have to offer? I can’t absorb what I need. I can’t have what I want. I don’t understand what I’m being given or what I’m supposed to do. I just know that, except for just after ECT and early in the morning, I feel sad and don’t want to be around people. Or I want to be held by S-. I feel calm mostly. I’m experiencing each moment. And each moment kinda sucks. But I’m okay with that. I’m here. I’m just sad. It feels good to be able to just be sad.

I’m so grateful for ECT & my team. Thank you, God. Thank you.

© Michelle Routhieaux 2015

I’m sorry

12/1/15     7:40pm

I did something that caused my best friend to explode. She called me tonight screaming at the top of her lungs about how she told me not to and she could sue me and I’m supposed to be her friend. There was nothing I could say. That level of distress requires time and sometimes drugs. It ruins friendships. It’s my fault. Whether or not I believed my action was okay I guess it wasn’t. I can’t undo it. I can’t make it better. She doesn’t remember what I remember about when we talked about it…

I feel very sad and I have goosebumps all over my body. My gut feels hollow, forehead burns. And I’m outwardly silent. There is nothing I can do. There are some serious needs of my own that I need to address tonight but in this moment all I can do is sit, furrowed brow, and wait. Makes me wish I’d never posted anything about the event. No good deed goes unpunished. No good friend unshamed. I really hurt her feelings and for that I’m sorry.  There’s nothing I can do to fix it. And there are thoughts I can’t post here. I broke her trust.

My mom is sleep-watching The Voice so I’m going to try to process my issues elsewhere, maybe with my penguin earmuffs. It hurts my heart to know I hurt her so much. I know the feeling of the crack in her voice and the inability to control the pain and the rage. I’m sorry. I’m sorry.

I have standards – Vent

12/1/2015     6:31pm

I don’t understand why people who don’t agree with my standards take offense to them. I’ve been working with a cardiologist since August. She seemed nice when I met her, listened, ordered some tests. I did a 30 day heart monitor study for her and was supposed to get the results the day of my echo and stress test that they couldn’t schedule before Oct 29th. She’s cancelled on me before and when I showed up she wasn’t there. They said she was doing emergency heart surgery somewhere else. I was NOT happy. They said to re-schedule. So I did. And they called to reschedule that appointment, which I had to cancel because I was in the hospital. Today I called to try again to schedule an appointment. I can’t see my neurologist again until I get these stupid results from this lady who’s impossible to see. The receptionist asked if I needed to see her soon or if it could wait until January. I said I don’t care when the appointment is as long as she shows up. She had the nerve to tell me the doctor was at my last appointment. She was NOT. “Then who did your stress test?” she asked. WHY THE HELL ARE YOU ASKING?! I told her who was there and that my doctor was doing some emergency surgery across town. “Well, that’s understandable,” she said. “It’s not really understandable to me,” I said. “Well,” she huffed. “Let’s hope you never need her on the table.” Well, fuck you, bitch. Is it impossible to just make the appointment and withhold your hatred for me until AFTER you hang up the phone? She said she’d make the appointment and make sure to tell the doctor to show up. Great. Just what I need. A staff member who hates me. I just want my test results. I want to be able to do something to move forward with feeling better. She did return my call when I was in the hospital about ECT but the voicemail she left me was completely unhelpful and uninformative. I’m starting to think this may be why I always use Sharp instead of Scripps.

I am entitled to be upset about the shitty scheduling in that office and the relative impossibility of seeing the doctor. She doesn’t have to agree with me but she doesn’t have to TELL me. Feel free to bitch about me to your coworkers AFTER hanging up, as I’m sure you already have. I’m not offended by other peoples’ standards as long as they don’t directly harm me. I wish others would politely act the same.

© Michelle Routhieaux 2015

Sound as Medicine

11/27/2015     8:45pm

I’m sitting at Dizzy’s with C-. I had forgotten the power of sound as medicine. I need to come back here. This is my home. Notes fill the air, float directly into my ears. Vibrations cut through my body leaving memories. I close my eyes and the healing is all around me. A broad bright smile comes over my face and I’m warm. I feel love.

I’ve missed it here. I used to come several days a week. I knew everyone. It was my getaway, what fed me, kept me going. But one day I just disappeared and 6 months passed before I realized there was something missing.  I’ve been hesitant, afraid to come back but it’s time. The music and its family are calling me. This place is full of healing and life, joy. Pain turns to sound & understanding. It’s okay just to be. It’s welcomed. Truth is okay. Truth is me. Welcome back to Dizzy’s.

When I came in I gave C- the biggest hug, then another. He sat down with me and got me a hot cocoa. I wish I had a dad. C- would be a great dad. Dr. H pointed out how much I really miss having a dad. I do.

A- just got here and Dr. C is schmoozing on a girl next to us. Weird. I’m thankful for Dizzy’s. Open-source healing, low copay, no limits. Amen.

© Michelle Routhieaux 2015

I want to be okay

11/23/2015     10:35pm

I just got home from DBSA and Ralphs. They were exhausting. I started the Wall of Hope. I sat in on Libby’s room, finished it off when she left. There were 2 nursing students there I invited from Point Loma Nazarene. On the way home M- had a panic attack on the 52 after asking me what ECT is like. A police officer asked us to switch and me drive. I told him I couldn’t. Thankfully M- improved with time and air.

Mom is on the phone with Don, who won’t answer when he’s coming back. Ellie is asleep next to me on the couch. NCIS LA is on the tv. I see Dr. H in the morning. I’m not sure what to tell her. M- is taking me. A- is driving me on Wednesday.

I don’t know what’s supposed to happen to me now. I feel like a different person. I’m not the same me. When I wake up in the morning I don’t know what to do, where to go, who to talk to. I don’t know what to eat, what to wear. I don’t know me. I think it’s harder coming home this time because my train of thought is different. My whole outlook has changed. I’m just not sure how to change with it. I want to be healthy. I want to be okay.

I wish I could have more structure in the community. I would love to live in a unit like South Rotunda. I don’t know of any that exist.

© Michelle Routhieaux 2015

Building a Life on Happiness

11-16-15     4:47pm

Homework: Imagine a life built on happiness…

Imagine a life built on happiness…

I would have energy and motivation. I would take chances and try new things. I would take better care of myself and spend more time with friends. I would DANCE and maybe have the guts to try musical theater again. I could tolerate spending more time with the girls. I would spend less time in darkness crying.

(eat dinner)

I would probably do more fun things like bowling and Zumba. I would be stronger, more able to handle others’ crises without crashing myself. I would have more art parties and probably shower more often. I might even be able to start brushing my teeth regularly. What a concept.

If I had a life built on happiness I’d paint my nails more often. I’d probably answer my phone and my self-esteem would improve. I could move on to DBT Level 2 and spend less time in appointments and therapy. Maybe my health could improve and I could have less random physical and neuro symptoms. That would be nice.

A life built on happiness would probably be filled with hope and possibility, art and writing, LOTS of music and dancing and yoga and movement. And maybe I could learn how to do nothing. That would be nice. I could find peace. Learn boundaries. Set limits. Take risks. Breathe. Be.

I just asked my nurse how long my seizure was today – 79 seconds. I wonder why they’re getting shorter (105, 97, 79.) I hope it’s not a trend.

I almost lost my room today. I’m thankful I got to keep it. I wonder how my life would be different if I had discovered ECT works for me before now…  I’m glad I’m brave.

I was right. Something did die with ECT – the intense need to die, the voice telling me I need to die somewhat constantly. It is almost absent. I feel a sense of wonder and joy. I do get heavy waves of sadness but not deathly despair. I feel happy to be alive.

Dr. H is letting me go to DBT on Thursday. Armando is going to take me and bring me back. I’m so glad I’m not dead. It’s a new feeling. This is a chance to reinvent myself, build a “life worth living” like they say in DBT. I’ve never been healthy before. Life starts now.

© Michelle Routhieaux 2015

Rearranging the Furniture

11-14-15     8:30pm

I’m listening to the credits’ music from “August Rush.” Feels like it should be later than 8:30pm. Mom brought me dinner and visited tonight. I’m really glad I’m here. I had my second ECT Friday and it went MUCH more smoothly than the first. They gave me nausea and pain meds in my IV and I’m not having as much memory loss. My muscles are still sore but that’s it. It’s curious because instead of forgetting people I know, I think I know people I don’t. Eh. Whatever.

I made a really cool bleeding tissue paper art piece today. It is multicolored with a picture of two mccaws in the middle and says “Fly Free” because that how I feel. I also made a bracelet that says “JOY.” I’m not sleeping very well but my appetite is back. I miss my dog.

I’m not sure what’s gonna happen when I leave here – if I’ll go back to DBT or what my schedule will be like. I know I can’t drive for two weeks but I’m not sure if I’ll be doing any maintenance. I look forward to going back to Soleil and Dr. H and the girls. I’m hoping this emptiness in my head doesn’t stick around and that the thoughts start to repopulate. My doc here says we’re “rearranging the furniture” and not to worry. That’s a tall order but I’m working on it.

(yawn, look around)
I got to talk to my aunt today… I feel like coloring. Maybe I will. I could draw or color some furniture, or just imagine it. I feel SO grateful. I find it curious how whatever controls seizures so strongly influences mood… We were going to watch “Roman Holiday” tonight but the new lady doesn’t want to. (long pause) The noise from the tv is hijacking my brain.  Let me reiterate how grateful I am for this hospital, my doctors and ECT and I’ll let you alone. Goodnight. :)

© Michelle Routhieaux 2015

My Inaugural ECT

11-12-15     7:08pm

I had my first ECT this morning. Kicked my butt. I had one of my favorite nurses today and a doctor I super love and trust did the procedure for me. I gave him a huge hug. I’ve had friends who’ve had it before but I wasn’t sure what to expect. Today – uncontrollable crying, super dizzy, intense nausea and muscle pain, and the inability to remember where I was, why I’m doing ECT and almost everyone on the unit – even people I’ve known for years. It was somewhat of a curious brain teaser trying to remember what the unit looks like. I’ve had a hard time catching my breath today but it’s getting better. They said I had a 105 second seizure.

I feel pretty wretched but I’m glad I’m doing this. I have another treatment tomorrow and then I have the weekend off, more next week. I made myself a bracelet that says “PROUD” today when I was finally able to get out of bed. I don’t have anything brilliant or exciting to share. I just wanted to check in. My mom’s coming with some food soon. I can’t wait to hug her and I hope I can keep the food down.

Thanks for caring and reading.

Love, Michelle

© Michelle Routhieaux 2015

The Red Wristband

11-11-15     8:55pm

I was given a gift tonight. D- visited and we sang. I shared some of me with her. She doesn’t want to lose me. I enjoyed the singing, the truth connection, but I still want to die. The exhaustion of interacting used everything in me. I talked to H- in the hall. Then J- came with a gift – a red wristband.

I never thought I would be one of those people who took a million meds or had a rolodex of doctors. I’ve never planned to be a sick person. I didn’t look forward to struggling through days. Yet here I am with a red wristband. I feel defeated. I’ve turned into Janet, only I’m not dead.

What does it mean about me?

  • I have ECT at 9am
  • My doctors are very concerned about me
  • I am sick
  • I have failed
  • I can no longer tolerate living this life
  • I am… free.

I think I can let go now, stop fighting just for tonight. God is here and my family is around me. My insides are hollow and my outlook dark, but my soul rises up. This is the end. I want to die.

I trust my team. I don’t want to let them down. I will sleep safely and meet Dr. M in the morning for ECT. I’m scared but I trust him with the brain attached to this red wristband. I just don’t trust myself.

I thank God for my doctors and my friends & family.
I’ll let you know how it goes.

© Michelle Routhieaux 2015