Adjusting to my "Normal"

This blog post has been on my mind for weeks. I don't know how many times I've started this post, hopefully I can finally make sense of all these racing thoughts. We have finally made it to getting my treatments 2 weeks apart. Sometimes it's harder than other times. Especially with this Covid-19 pandemic and having 7 kids home 24/7. //sigh// it's been rough on the kids and therefore rough on my mental health

I used to memorize license plate numbers, phone numbers, random facts, and everyone's birthday. Now I struggle to remember anything, and it's often discouraging and frustrating for me, my kids, and my husband. 

I used to be organized about just about every part of mom life. We had outings every week, each day was assigned a certain task, cleaning was always kept up with, laundry was planned and organized perfectly. Now I can't do any of it. I'm finding it hard not to beat myself up for falling behind on the dishes, laundry, and dusting. I don't vacuum like I need to, and I don't menu plan at all. It's just too much with my treatments. Even if they are 2 weeks apart finally.

I used to have a specific way of discipline. I used to read books for myself and to my kids. I used to sing to my kids at bedtime. I used to stick to a specific routine for the day. Bath day was always the same days and times. I played outside with the kids. I did it all myself for years as a single mom. I have lost a lot of myself.

I had a fear that I've lost myself. That I'm not "me" anymore. At times that has been really depressing and discouraging. At times I wanted to give up, and I let my thoughts get me down. I've felt that I'm not a good mom anymore, I'm not smart, I'm not a good wife, or home maker, or pianist, and the fact that I can't sit down and read a book anymore has frustrated me so many times.

But I've come to realize that this is my new normal. This is a temporary problem, and we will spread the treatments out more and more, then eventually we will stop all together. I will get back some of my old ways of thinking and remembering and acting. But some of this, is my normal now. I don't have to be the same way I was before in order to be good. 

Being a little slower, a lot more forgetful, and less organized is not all wrong or all bad. I just have to learn to accept this new normal. My amazing husband, my awesome kids, my great coworkers, my neighbors, family members, and friends have all accepted the new me, so why shouldn't I?

Learning Piano

One of my favorite memories as a small child was when my dad would pull out his guitar and sing, sometimes we would get to sing with him in a talent show or just at home. He sang a LOT of "Simon and Garfunkel" or "Peter, Paul, and Mary" we loved songs like "Puff, the Magic Dragon" and "The Sounds of Silence", "Marvelous Toy" and "Rhinestone Cowboy" (among others). In my opinion, my dad was the best singer and guitarist in the world. I still think he's among the top 5.

As I got older, I felt a desire to be like my dad, but I wanted to play piano instead of guitar. I begged my parents, but we were poor and my 3 older siblings had all given up on something my parents had put money into so they weren't really thrilled to get me piano lessons.

In 1991, when my oldest brother left on his mission I wanted to cry when he had a special musical number for his farewell and I couldn't be a part of it, I didn't know how to play piano or sing. 

In 1992, my dad was helping a family move in a couple blocks away. They had 2 pianos AND an organ. My dad asked her if she taught lessons, and how much it would cost. (I guess my begging had gotten to be too much by then.) The elderly couple had a dog, and it was getting to be too hard for them to walk him. She asked my dad if I would walk their dog in exchange for piano lessons. Of course my dad jumped on the chance.

So in the summer of 1992, at the age if 12, I started to learn piano from an amazing woman named Barbara Jepson. I worked my way through the beginner books, embarrassed to be playing such simple songs at my age. I still remember my first piano concert just 21 months later. Barbara told me she'd never had a student learn as quickly as I did. 

By the time I turned 16, I was in the high school orchestra, jazz band, concert band, and pep band. Some of my high school friends may not think that is very impressive, haha. But I was so happy to be using my talents.

Here I am, almost 40 years old, struggling to play like I used to because of medications and ECT. But I'm ALIVE and I can still play fairly well (I think). I hope to share this skill for the rest of my life because I believe it was given to me from Heavenly Father. And the fact that all my suicidal thoughts haven't taken me from this life, and I've been lucky enough to share my story and keep my talents means something! 

I hope this doesn't come across as boasting. I am so grateful to be able to share my story. To still be alive, and to be getting better every day.

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

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.

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".

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