Tuesday, February 4, 2020

Electroconvulsive Therapy

When I was a brand new mom, I had plans, goals, and ideas. I was organized and I always had a plan. Each day had a "name" and I don't really remember it all now, but there was a day for cleaning the kitchen, a day to clean the bathrooms, a day to change the bedding on all the beds, a day to organize the cupboards and pantry. 7pm was always time for baths/showers and brushing teeth. Kids always got to bed at 8pm. If anything was off-task I had a panic attack. I wasn't always good at it, I often fell behind and I still had plenty of things that I failed at. For example, I was (am) not good at keeping up with the organizing and decorating.


Well, fast forward a few years. Skip ahead to my hospital stay, and my Electroconvulsive Therapy ("Treatment" or ECT). I've been doing these treatments for just under 6 months. When I first started treatments, side effects were much worse. I knew I'd had a seizure, my entire body would ache, and I was certain I knew what an epileptic felt like.
When I was inpatient, Jason told me that a lot of people helped my family. Watching kids, arranging playdates, bringing meals, checking in on everyone. I am so grateful for all the people that helped my family when I couldn't be there for them. Let me make it very clear that I am eternally indebted to those who have helped my family. I hope this doesn't come across as me being negative or ungrateful. But the whole point of my blog is to get things off my chest, and to help me share things about my mental health journey. Let me also make it very clear that ECT has affected my memory and some of this could be wrong. But this has been on my mind for months now and I feel a need to share it, if only for my own benefit.
When I got home from the hospital, things started out with the typical excitement you always feel at a homecoming. I could cuddle my kids every night, I was home in time for a brief vacation with Jason's brother and new sister-in-law. I was home in time to get my kids ready for back-to-school. I was not able to drive yet (due to ECT) but I was able to physically be with my family and that was InCrEdIbLe! I was on an emotional high, heck, we all were! It felt perfect
Soon, things started getting back to "normal" except for one thing, I was still undergoing treatments. I knew it was working for me, and I had every intention of continuing. As treatments progressed, we tried to spread them out in the hopes of eventually being able to stop altogether. It didn't work, I started to "sink" (emotionally) and we had to move treatments closer together again. It was really hard on me, emotionally, physically, spiritually, and of course mentally. Being hard on me meant it was hard on my family. But I was home, so why would anybody need to help us?
So we started changing my medication and working with my counselor, my psychiatrist, and the staff at the ECT clinic so we could move treatments further apart. I was still on a type of "high" because I wasn't in the hospital anymore. But side effects were really bad and it was getting harder and harder to keep up with the things I needed to do. At least I thought I needed to do these things. And the help and support was less and less.
The depression is under control. Suicidal thoughts are few and very far between. But I yell like never before. My poor kids have taken the brunt of it because they are the only ones around, and they are almost always around. My dad had to tell me the other day that I had "gone too far" when I was punishing one of the kids. I use swear words like never before, I'm disgusted with myself. I end up apologizing and "beating myself up" for the way I react to things, and the things I'm failing to keep up with. I don't dust, or scrub walls/ceilings. Cobwebs are everywhere. I can't keep up with the laundry. I don't know the last time I helped the kids change their bedding, let alone the last time I changed my own. I rarely vacuum. I don't go shopping like I used to. I don't plan the menu. I don't bake "for fun". I struggle to keep up with the chores. I rarely do "fun" outings, (we used to use Groupon and other deals at least once a week).
So, what I'm saying is: ECT is doing what it should. For the first time in over 25 years I have felt an improvement in my depression. But the side effects are so incredibly difficult for me! And because the "thing" I was hospitalized for has improved, it seems like nobody cares anymore.
I don't want to sound needy or whiney because for the most part, I don't really need much of anything. But, I recently talked to a friend of mine that is a cancer survivor, and talked to a family member (who is also a friend) and read an article, all of these things have helped me find words for what I'm trying to express right now. If this were any other illness it would be different. My exhaustion would be understood, accepted even. I wouldn't be expected to work the day before/day of/day after treatment, especially not when I have to fast. My messy house would not be something to look down on, it would be "hey, I see that you need some help, can I come help clean your kitchen?" My forgetfulness wouldn't be mocked, it would be understood. Mood swings would be something to help with, not another thing to look down on me for.
I find myself resetting passwords, passwords I use daily are getting reset constantly. I forget recipes I used to have memorized. I forget how to play songs on the piano that I used to play all the time. I rarely read to my kids anymore, it's too hard to read. I never read for myself, I'm just going to forget it all. Every treatment is a little different. Sometimes I'm really sick, other times I'm just a little nauseated, and other times I don't feel sick at all. Sometimes I can't do anything but sleep for 2 days, sometimes I just sleep for a few hours.
I am going to close this, by begging all of my family, friends, and my readers (though they may be few!) to show a little more compassion and kindness. You don't know what the person next to you may have gone through recently. Don't stop showing love and sympathy just because you "think" someone is doing better. I'm not begging because I want that love, sympathy, and help for myself. Though there are days I could use it, I have a great support system in my parents, my teenage daughter (she's pretty amazing) my husband, and even my other kids can be pretty helpful at times. Just know that everyone out there is fighting a battle, and you rarely know anything about it. So BE KIND

Thursday, November 21, 2019

A Day in my Life of Mental Illness

It started out with me missing my alarm. Somehow I turned it off without even knowing, and fell asleep. Luckily I woke up just before 5, so I wasn't TOO late to work. But my illness is telling me how I must be stupid for sleeping through turning off my alarm. What kind of idiot does that?

Work started out rough, I was very overwhelmed for the first 2 hours, trying to keep up. So many people coming to me with problems, concerns, complaints, questions, etc. As I work, I make jokes with coworkers, I chat about life, I'm outgoing and funny outside, I'm fighting darkness in my mind. Suicidal thoughts bombard me as I show pictures of my baby girl, talk about my kids, and continue to work. Nobody knows the darkness I'm fighting.

On the walk to my car after work, I get a text from Nathanael's teacher, asking me to make sure he makes it to a group meeting that is about to start. That means I need to hurry home and tell him to log in. No stopping for that soda I wanted. But what was I thinking, I don't deserve that anyway. It was selfish to think of spending that $3 on myself. I can't even get my teen son to be a responsible student, or to keep up with his chores, or be polite. How dare I think of buying myself a drink!?!?

I rush inside, tell Nathanael to login to group. Look around the house at all my failures. I can't keep up with laundry or dishes or dusting. I can't decorate, I don't  know when I last vacuumed. I tell my son I love him, hoping he knows that all his mom's failures aren't his problem. His mom is terrible but he is good.

I go to get Emily, but she's asleep with grandpa so I go get TJ from preschool. As I drive, I'm bombarded with suicidal thoughts. These kids deserve better!

When I get home with the babies, Nathanael is done with group so I ask him to boil water for macaroni while I pick up. When I come back to the kitchen, he hasn't moved from the computer screen. This is my failure. I reorganize the pantry. Work is supposed to help chase away depression. Instead, I beat myself up for failing to keep the pantry neat.

I try to reach out to friends, but delete every text before sending as I'm bombarded with suicidal thoughts and intense darkness.

Finally I text Jason. We had a good chat, I think I'm doing better, and it's almost time to get the kids from school anyway. I grab myself that soda I wanted earlier.

When I pick up the kids, I remember Vanessa has her meeting so I'm going to have to wait an hour. Carson asks to play with a friend, I don't know the family so I'm uncomfortable with it. But my kids never get invited anywhere. They haven't really had play dates since I got home from the hospital. My kids are suffering because of my illness. I begin to beat myself up for ruining my children's lives. I let Carson go, and Faith joins him. Either I'm crappy for keeping him from friends or I'm crappy for letting him go. Either way I lose, and the darkness takes over again.

I forgot my jacket and it's cold out so I'm stuck in the car for an hour with 2 toddlers. Thankfully we have Disney+! When Vanessa comes out, we can't find Carson. I spend 20 minutes driving around and wandering the school grounds, fighting the dark thoughts.

Finally, we're headed home. Dinner is frozen taquitos instead of the cashew chicken I planned. I suck. I push through dinner, clean up, bath time, brushing teeth, and family prayer. I start with scripture study, and after 20 minutes of fighting the kids to "shush" "shut up" "sit still" "listen" I lose it. I scream, swear, and tell them I'm done. I walk away and hide in my room, which forces Karleah to get them all in bed. Which is another failure.

I'm not going to kill myself. I dont have a plan. But these dark feelings are strong today. I lost the battle today. But I'm not quitting. I'm fighting harder than anyone knows.

Sunday, November 17, 2019

Today it Hit Me

Today, I sat close to my sweet husband, I held his hand as we partook of the sacrament, listened to the talks, and sang the hymns during a wonderful sacrament meeting.

As soon as the closing prayer was finished, I grabbed my piano music and headed to primary.

When I'm playing the piano, I always sing the words to the songs I'm playing (usually in my mind)

Today as I played, I fought back tears as the weight of the past 4 months really hit me. (Totally random.)

As I played piano and the primary children sang, I continued to fight tears as the weight of it all really hit me. "I almost wasn't here for any of this. Holding Jason's hand, going to church with my family, playing piano, singing hymns and primary songs. I almost wasn't here for any of it."

I am so grateful for my family. All the stress they cause, all the struggles of life, and I'm so grateful that Jason listened to the prompting to brush his teeth in the "middle of the night". I'm glad I'm here for this crazy thing called "life".

Wednesday, August 14, 2019

Goodbye UNI, I'm going H-O-M-E

Thursday, July 31st

Just talked to my "team". We're hoping I can go home this weekend! I have another ECT in the morning, and if things go well I may be home Saturday or Sunday. My social worker is going to call Jason, so I'll talk to him tonight! I am nervous to go back, because there are a lot of responsibilities I don't think I'm quite ready for.

Karleah has taken on so much the past 2 weeks, I am in awe of the young woman she has become! I'm worried about the bills getting paid, the food getting prepared, the kids having what they need. I'm trying to take things in baby steps, not jump in all at once. There is so much involved in being a mom! For now, I'm praying for peace and patience as I prepare to go home. 

Friday, August 1st

I can't believe I've been here almost 2 weeks. Today's ECT went smoothly. My sweet hubby will be here later today to meet with my medical team, and make a plan for me to go home. I'm nervous to take on all my old responsibilities again. I feel so blessed to have Karleah helping while I've been in the hospital. I've never felt so much love and support in my life!

As of right now, the plan is to go home tomorrow after lunch! I feel like I am finally getting the hang of life here in UNI, and I'm going to leave! I'm so scared to step back into being a mom. I don't know if I'm really ready. I'm tired of being away from home, away from my kids, away from work. But I'm even more afraid of going back to the old life, where I was when this all started.

I missed Judy's funeral, I have missed so many things with my kids, I need to get back to reality. Even though it's scary...…. I am so incredibly proud of Karleah. She has really taken a lot on, and I can't possibly express all the gratitude in my heart! She is just a kid! My mom has helped a ton, too [she even potty trained TJ!] but Karleah is only 17!!

The Low Between Treatments

Yesterday is a blur. I'm feeling the lows of being in between treatments. Thoughts of self-harm keep coming to mind, and I can usually get rid of them pretty quick. Dr. Hunziker pointed out that my countenance is much brighter than it was when I arrived here. That's good to hear, because today I am feeling pretty low, dark, depressed, and MOODY! I'm grateful to be here, where I can be watched out for and helped. I know my kids are struggling and hurting, but I am grateful to be setting this example for them, of admitting when I need help and getting the help! The thought of them swarming me with hugs and their sweet voices is a little overwhelming.... But I know I will be there soon, and all of this will just be a memory. I just want to curl up in Jason's arms!

Today I decorated my wall. I have the card from Katie, a card from a patient named David, a puppy TJ scribbled on (it's Lady from "Lady and the Tramp") a flower painted by the kids, a temple drawn and painted by my kids, a mom puppy hugging a baby pup with a heart background (from my kids) a pic of Emily swinging a sparkler in Jason's face (she managed to burn his face and her leg with said sparkler), and cards from Carson, Vanessa, and Faith.

I try to use these decorations as a reminder to get better. We need each other, our family is forever! This is a big challenge for all of u, and I know we can get through this! But I can hardly wait for this all to be a memory. 💓💜

Lucas, Lilly, Jeanine, Anthonio, Karleah, Caranina, Nathanael, Carson, Vanessa, Faith, TJ, Emily I love you all!

Ammie 💜 Reno

The First 2 ECT Treatments

This morning (Friday, July 26th) was my first ECT treatment. I woke up with a lot of pain in my jaw, calves, and head. I've spent a huge percentage of the day in my room, and most of that time I was sleeping. I did finally get my own clothes, so that feels really nice. Still ate by myself on unit, but I am a little anxious about leaving anyway. I always feel so self conscious in a new setting, especially when I'm the only "newbie".

Back to the ECT.... I woke up very slowly, and when I woke up more fully (around noon) I felt light. I was amazed at the quick results, and had the most hope I've felt in years! 

Saturday, July 27th 

I had my 2nd ECT so I've been very lazy. My goal for today [every day in group, we set a goal when we talk about our mood] was to admit when something is wrong and get the help I need. So far I'm failing. I think sometimes I wait for everything to fall in place before I do something. Like if the med nurse isn't in the med room, I won't go find him/her to get my meds. If someone asks if I want some ibuprofen for my body aches, I say "no". If there is a line for meds, I just walk away. I basically wait for the med nurse to just be sitting in wait for me.

I miss indexing. I really want to be working on something more than coloring pictures or doing puzzles. Group just feels like routine now. I haven't really socialized but at least I've been able to play the piano. When I do finally go home, I'll be slammed by work, kids, dogs, housework, and all my routines. It scares me..... I hope I don't end up right back in here.

I haven't seen most of my kids for a week now. Saw Karleah and TJ last night, and I've seen Emily every day, because she is nursing. As much as I miss them, I am afraid of going home and becoming completely overwhelmed by them all talking and needing me. But I'm also full of guilt for making Karleah take on so much, and for adding to Jason's stress load. This is hard on everyone, and I hate being a burden.

Jason really is my rock, and the anchor and shield his patriarchal blessing states he is. I feel so truly blessed to have Jason as my eternal companion, my best friend, and my lover. I don't know what I would do without Jason by my side.

Today has been a crazy whirlwind. I haven't done much, I've just been sleeping, writing, visiting, or doing puzzles. Actually every puzzle I start makes me mad because of all the lost pieces, so I haven't finished many.

I was able to attend sacrament meeting here in the hospital. It was really simple and short.

Jaron and Megan have taken my girls to stay the week, and Carson is off to scout camp, so it's Karleah, Nathanael, and the babies at home. But Jason did ask the relief society to bring meals, so I am glad Karleah has some help (besides my mom).

Tomorrow is my 3rd ECT, so I hope it goes well. (I don't remember if I ever wrote this, but ECT stands for electro-convulsive therapy). A quick explanation in case I haven't written it before: Electric currents are sent through my brain, causing a seizure. This is supposed to "reset" the parts of my brain that tell my body I'm depressed. I am also given a medication to paralyze my muscles so the seizure isn't too hard on my body. A blood pressure cuff is tightly placed on my wrist to keep the paralysis medication out of my hand, so my hand shows the length and strength of the seizure. Each treatment, they adjust the amount of each medication based on my reactions after the last treatment. For example, if the seizure made me really achy, they add more pain medication. When I have waken up nauseated, they add anti-nausea medication the next time. I love the technology! But I'm also very ready to be back in my own routines again!

[an addition for my blog, which is not in the journal I get the rest of these entries from.... if you are interested in watching an ECT treatment, there are many videos on YouTube. My kids all watched them to help them understand what I was going to be experiencing]

All Night Panic Attacks

Thursday July 25th 2am
University Neuropsychiatric Institute

Just had one of the most intense panic attacks of my life. Fighting the desire to self harm, battling invisible demons, and silently screaming. I sometimes try to convince myself I am OK, when I am not. Even here, I wonder if I'm overreacting. I picked up this pen to remind myself:

MY ILLNESS IS REAL! I AM NOT OK, BUT I DESERVE HELP, LOVE, SUPPORT, COMFORT, AND EVEN MEDICAL HELP!
AMBERLEAH!
YOU ARE RIGHT WHERE YOU NEED TO BE! YOUR ILLNESS IS NOT MADE UP, AND POSITIVITY WILL NOT HEAL IT!

I seriously cried and fought so hard I feel like I did a major, full-body workout! Hope I can sleep.

9:45am
I fought those urges to self harm most of the night. I felt paralyzed by fear. One of the nurses gave me some chamomile tea, which relaxed my body but my mind still raced. I thought about getting up and asking for something to help me sleep, but the fear of being vulnerable enough to admit my weaknesses to strangers...… was.... too strong. So I lay there in the dark struggling in silence. I did finally pray, and did receive some comfort. My healing image today [every day in UNI, we try to come up with a healing image to help us get through the hard times] is to lay in bed, curled up on Jason's chest. I miss my family so intensely! Thinking of how I can tell my kids about this time and encourage them in their own trials so they don't have to sink to the lows I've seen..... I love those kids so, so much! 💗

Katie apologized to me, it was very real and sincere. I high-fived her  because we both got through a tough night. I felt a new connection. Now they're moving her downstairs because of her suicidal thoughts. I will continue to pray for her.