Dear Psychosis, I hide it well

Dear Psychosis,

    I hide it well... Most people would never know I have psychosis. I hide my symptoms. Lots of smiling, having normal conversation, playing games and attending different activities with friends and family. I try very hard to not be detected, trying to not stand out or be odd. Of course, there are tell-tale signs: The nervous rocking, the shifty eyes, the staring into mirrors for too long, the zoning out. I don't constantly do these things. My meds help me to be "normal". My people tell me they can see a difference in me. What is normal? I can remember when things were "normal". When I could hang out with friends and laugh and cut up without the shadows watching or the voices in my head telling me I'm not good enough. I could pay attention at church, I could listen to friends telling funny stories and not completely miss the punch line because I lost concentration. I used to have the best memory, now I can't remember things from room to room. I remember not having to work hard to just be around people. 

    My whole personality has changed. I'm not the same person. I have emotions, but sometimes they are hard to express. I'm not the same woman my husband married. I'm not the same sibling my sisters grew up with. My friends see a difference in me. I hide my symptoms because it's hard to face the truth. It's a constant battle within myself. What would people think of me? I'm not saying I don't have good days, because I definitely do. I have days where I don't see, hear, or smell things. Paranoia is always there, but some days it's less overwhelming. But I hide it. 

    Hiding can be exhausting, why can't I just be real? This disease is a part of me, isn't? Oh, the looks I would get, the things that would be said of me, the kid gloves I would be treated with. Am I caring too much about what others think? I just want my dignity. I don't want to be used in the wrong ways. Will my employer not want me working with them anymore? 

    The fact is I don't have to tell anyone if I don't want to. No one has to know what I'm going through. Hiding can be exhausting, but it can also make me feel safe. My biggest fear is that someone is going to use my disease against me, that I'll get taken advantage of or that people won't take my words as truth. "Oh that just that crazy person,' 'They are out of their mind,' 'They've been in the looney bin,' 'They aren't all with it". I hide it well because people are ridiculous sometimes. 

    I've learned to hide things and joke about some of it. When you feel like people are reading your mind, you would just be extra silly or very quiet. My symptoms are all around me so pretending they're not there can be difficult, but I'm more scared of the things people will think of me then the things I'm seeing or hearing. I know I shouldn't care about what others think of me, but the fact is I definitely do. I was raised to be the example others needed. How can I be a great example if I have so many things going on in my head? It's one reason I started this blog, because I want to be the light when someone is fighting some of the darkness that I struggle with daily. But I still hide for the most part.

Sit up straight and tall

Don't let your head hang low

Don't shift your eyes

Always make eye contact

Think good thoughts 

Don't get upset 

Be the "Good" example

Carry a conversation well

Don't zone out

Just keep Smiling you've got this...

 

Dear Psychosis, Things I'm Thankful for...

Dear Psychosis,

Things my psychosis makes me thankful for…

• Good medicines 

• Doctors/Nurse Practitioners that listen and help

• An amazing group of people who love me 

• Therapists

• Selfcare

• Prayer

• Meditation

• Coping skills

• Spreading awareness 

• Getting to know others with my same struggles

• Blogging 

• A wonderful job that works with me and my condition

I am abundantly blessed. I thank God for all of my blessings, especially throughout the past few years. Times have been hard, but things eventually always look up. I hope you hug your families a little tighter, enjoy your friends just a bit more, and always hold onto the hope that tomorrow will be a brighter day. This world needs us in it.

Dear Psychosis, What's it like being a Mother

 Dear Psychosis,

    So what's it like being a mother to a 6-year-old while dealing with psychosis? When I was first diagnosed, I didn't know how I was going to be the mother that my daughter needed. How would I take care of my child when I could barely take care of myself? Was my husband going to feel like a single dad? Would my daughter find me odd? Would I do something that regretful that she would never forgive me for? Would I scare her? What would she tell her friends? So many questions have passed through my mind. I care so much for my daughter that I want to protect her from everything. I'm learning I can't protect her from everything, but I can certainly do my best.

    We have decided we are waiting to tell my daughter what is going on. At this point in life, she just wouldn't understand. We don't want her worrying about something she has no control over. When I'm in a deep episode we (my husband) just tell her that mommy is sick. I have had to spend time in the hospital getting meds changed and fine-tuned. We just told her that mommy had to go to the hospital so doctors could make sure I wasn't sick anymore. I remember after getting out that we went to a school field day to watch my daughter compete. Her teacher came up to me and asked how I was feeling and that my daughter had told her that I was in the hospital. I was so embarrassed to know that I made my daughter worry so much that she mentioned it to her teacher. Of course, the teacher didn't know why I had been in the hospital and was just asking out of concern. I smiled and said I was doing much better. I just want to keep my daughter's innocents for as long as I can.

    Sometimes my symptoms get in the way. I hear and see things that aren't really there, which can make things confusing for me and her. I can hear my daughter saying things to me sometimes. When I answer or ask what she said she normally says "what mom? I didn't say anything." Sometimes I've seen her quickly run pass me, and I'll ask "What are you doing?" She'll be in the opposite end of the house. I've struggled with this because one day she will realize what is happening. I've talked to my therapist about this because sometimes thoughts like this consume me. My therapist just reminds me that I'm going to have good and bad days. That the people around me will understand because I have such a good support system. I don't want my daughter to be a part of my "support" system. She's still young, without a care in the world. I want her to know the love I have for her, that she will always be my baby. That I keep her safe and warm forever. I never want her to be sad because of me and my situation. 

    Parenting is already so hard. We all just want to make the best decisions for our children. We want them to have good morals, have hearts full of compassion, to be strong and independent people. I don't want my child to struggle with mental health challenges because I have. I don't want to cause any kind of childhood trauma because I wasn't a good mother.

    I have to take it day by day. I am never going to be the perfect mom. The cookie cutter mother is a mold I will never fit into. But I can strive to be the best mom that I can possibly be. I want my daughter to be able to come talk to me anytime she needs anything. I will always be here for her. Sometimes it just comes down to playing a game, reading books before bed, or being quiet and letting her talk. We will eventually have to face challenges, but we will be facing them together as a family. I'm not going to sugarcoat it. Some things are going to be hard. My daughter will always know I support her to the moon, that I will always love her with every fiber of my being, and that we will always work things out. 

"Motherhood is... difficult and... rewarding."

-Gloria Estefan

Dear Psychosis, This is how I cope

Dear Psychosis,

    This is how I cope... First, I want to begin by saying that there can be negative and positive ways to cope with what's going on. Some examples of negative coping skills maybe smoking or vaping, self-harm, taking it out on others, or trying to run away from the problem. Some positive examples can be going for a walk, listening to music, meditation, deep breathing, or grounding yourself. Coping is basically the collection of thoughts and behaviors we use to manage the stressful situations in our lives. If we can't help ourselves, it makes it really hard to function from day to day. Healthy coping skills not only help alleviate the symptoms of psychosis, but they can also keep your overall mental health in check. I suffer from severe anxiety and sometimes I just need to take a minute to breathe. Coping comes in all shapes and sizes. I'm here to tell you about how I cope with psychosis.

    Psychosis can cause MANY different symptoms. I'm just going to talk about how I cope with my symptoms.

    Hallucinations: I hear and see thing that are not really there. Because I have Insight, for the most part I know that those things are not real, but sometimes it's hard to tell my symptoms from reality. This is where my positive coping skills come into play. For example, I see bugs. Normally when I see said bugs, they are funny colors or maybe translucent looking so I can tell right away they aren't real. But sometimes they look very, very real. That's when I "question" the people around me by saying "hey did you see that spider?" "Is there a bug crawling right there?" I also do this when I hear things. Most of the time I hear babies crying, radio static, or a cat meowing (and yes, that last one is very annoying). I cope by checking with others around me. I also cope by listening to music or an audio book through my ear buds. Sometimes I just need to drown out the noise.

    Sometimes I cope with these things in a negative way. When I feel overwhelmed by these things I just need to smoke or vape and it instantly calms me down. Of course, I know that this isn't healthy, and I shouldn't do it. I have also used self-harm to cope before. This one is hard to talk about. I used self-harm as a release from my struggle and pain. I didn't do it to kill myself. It was not an attention seeking thing. Actually, it was very private and no one really knew about it. I did it to hidden places on my body that no one would see. Coping with things can be hard, and we don't always cope using the healthiest methods. Most people are just trying to make the chaos stop.

    Paranoia: Yes, I have paranoia. It's a harder symptom for me to cope with. Examples of my paranoia include feeling like people can read my mind and feeling like things are constantly watching me. I feel like this is a more difficult topic for me to cope with. I don't feel like I can check in with others. I think it would be odd if I asked "hey are you reading my mind?" or "is that a camera in that vent?" This is when I wiggle my ears... Yes I know that sounds odd, but when I wiggle them, it feels like I'm cutting off any interaction with what is watching me and reading my mind. Coping can be weird sometimes. I am well aware these things are not possible, but to me it still feels very real. It's also very hard to be in a crowd for very long because it makes me feel overwhelmed. Thinking that hundreds of people can read your mind at all times can be exhausting. I have to think good thoughts constantly, nothing negative or insulting. I cope with this by simply stepping away. "Peopling" is hard when you think all eyes are on you, but by stepping away I can breathe for a moment. Ground myself back to reality. Sometimes I have to be my own coping skill. I have to talk myself down and remember what is real.

    The Smells: Have you ever had a smell stuck in your nose that just won't go away? I definitely have! Sometimes it's marijuana (no I don't smoke it), old lady perfume, garbage, or fingernail polish. I don't have to be around these things to smell them, they just show up! I cope with it by trying to smell other smells such as my diffuser filled with essential oils, aromatherapy sticks, burning incense, baking something that smells yummy, going outside for some the fresh air, etc. 

    Coping can come in many different shapes and forms. I just do my best to keep myself grounded. Reality can be hard sometimes living with psychosis. Figuring out healthy ways to deal with your symptoms makes your life much easier. I have been doing therapy for a while now and we talk about coping a lot. We work through hard topics. Coping the positive way sometimes doesn't always come easy. My psychosis doesn't define me, it's not who I am. I choose to deal with my psychosis in positive ways, because I know it makes my world better.

Here's a good Grounding technique:

Works with all of your senses:

(Take deep breathes)

Sight: Pick 5 things you can see

Touch : Pick 4 things you can touch

Hear: Pick 3 things you can hear

Smell: Pick 2 things you can smell

Taste: Pick 1 thing you can taste

 

Dear Psychosis, We aren't all monsters

 Dear Psychosis,

    We aren't all monsters. People with psychosis get a bad rap. When some people think about certain mental disorders, they expect to see someone inside a padded room strapped into a straitjacket and completely out of their mind. I know people think this way, because this is how I also used to think. I've struggled with letting that stigma go in my head. How will people perceive me? Are they thinking about what I'm going to do next, or maybe wondering if I'm hearing or seeing something right now? Or are they wondering if I'm going to harm myself or others? I want to tell them that yes, there are some people experiencing a psychotic episode who can't grasp reality in the moment. This can be very scary, and these people just need help. 

When I first got my diagnosis, I thought I was a freak. I was worried about what my family would do. Would I be treated with kid gloves from now on? I was also worried that people would think I wasn't fit to be the mother my daughter needs. I think this thought was heavier at the time than I could really handle. How would I be a good wife? I mean, we said through sickness and health, but is that how it really works? Would my husband love me less? I felt as if I had a sign around my neck that said "handle with caution and don't look it in the eyes". I can definitely see why people don't fully understand what psychosis really is. It can be very scary, but we are just people who need a little extra love and understanding. We don't need to be hidden away like the Phantom of the Opera.

Oh man, I have had my moments! When you're interacting with someone in the middle of a severe episode of psychosis, it's scary for not only them, but for everyone around them as well. So how can I be helpful? Ask for professional, medical help. I know in some cases, the person might be resistant, because of paranoia or the voices in their head telling them they shouldn't get help. I personally struggle with taking medicine, so I completely understand this can be hard. Through therapy and learning healthy coping skills, I have gotten a lot better about this.

We can't just be thrown away. I have heard people say that suffering from a mental illness is like being addicted to a drug and that we will only hurt our loved ones over and over again. That we will always go back to being out of touch with reality. That really bothered me, because I didn't ask to take psychosis on. It was simply part of the hand that was dealt to me. We don't strive to hurt others; we honestly think what we do while in psychosis is based in reality. 

Some of us even have insight. When I am not deep into an episode of psychosis, I have insight. I know that what I'm seeing isn't real. I know my paranoia isn't possible because that's not "reality". If I ever question anything, I just ask the people I'm with questions like "do you smell that? Do hear that? Did you see that?" That's one of my coping skills.

I have come to realize that I'm not a monster. Do I have extremely bad days? Absolutely. Can I cause harm to myself or others? Most definitely. That's when I need my community the most. It's ok to ask for help and not feel like a freak doing so. We are not as big and bad as most people think, we shouldn't be thrown out like trash. Please don't give up on us, we are not MONSTERS. 

 

Dear Psychosis, I just need someone to relate to

 

Dear Psychosis,

    I just need someone to relate to. When I first found out about my psychosis, no one could understand what I was going through. I couldn't explain to someone what seeing hallucinations felt like because they have never had to experience it. They just don't quite grasp it. It's not their fault. I'm glad they have never experienced psychosis - after all it can be terrifying! But because it's so scary, and some days never-ending, I just need someone who knows exactly what I'm going through. I need someone who can say I believe you are seeing those things, smelling those phantom smell, and hearing those things in the back of your mind. They may not be real to anyone else, but they are very real to the person experiencing them.

Why don't we talk about it? Truth is, most people know someone who has dealt with psychosis before. Psychosis can be caused by many different things such as depression, bipolar, schizophrenia, being on certain drugs, etc...  If we all started talking about it, we could help someone we didn't even know who struggles with it. 

The Stigma. To be honest, it really gets under my skin when someone says "end the stigma," because although it would be good to talk about these things and have the stigma go away, I don't want to be taken advantage of. I don't want my words to be twisted and have no one believe me because of my mental illness. I want to be a strong person who everyone wants to be around. I need that interaction and I crave it. But when will I stand out? Who will I stand out in front of? How do I know I'm safe?

Personally, I am slowly letting people know I experience psychosis. I don't share my diagnosis. No one ever needs to know that if I don't want to share it with them. I just remember that psychosis is a side effect, not a disease. By letting others know, I might reach someone who needs me as much as I need them. It's ok to talk about it, especially with people we feel safe with. It's ok to talk about our struggles. I know it's easy to say to ourselves that I am weird or odd. In fact, we all are a little weird in our own ways - no one is perfect. You wouldn't ask a person who has bad cholesterol not to talk to others about their struggle. So why can't we talk about our struggles? Mental health is so, so Important, and some mental health diseases will never go away. We shouldn't have to hide away because we are a little different. We should find the beauty in others. Sometimes our weakness is what has built us, made us stronger and who we are today.

I never want anyone to feel alone, because I know how it feels. Loneliness can be a dark, damp place. I need that light and warmth as I struggle. I just need someone to relate to.

"Loneliness and the feeling of being unwanted is the most terrible poverty."

- Mother Teresa

Dear Psychosis, My Struggle with Medicine

 

Dear Psychosis, 

     My struggle with medicine has been a rough one. When you have paranoia it's hard to trust people and it feels like there's something constantly watching you. You worry that someone is tampering with the meds that are suppose to change your brain up. I especially have a hard time taking capsules. After all, those can be cracked open and have things place inside. I mean, what if someone wants to track me, poison me or have control over my mind. I take Caplyta, which is a great drug. But it's a HUGE capsule! 

    This is where my coping skills come into play. I have to listen to my pills, which I know sounds odd. I put the pill up to my ear and shake it. If it makes any kind of noise at all I have to crack it open and put it over peanut butter. Some people would say this isn't a great coping skill, but I have talked to my therapist about this. She says if it gets me to take my meds she doesn't see anything wrong with it. 

    I've been taking my medicine for a while now and listening to my pills has gotten easier. I rarely do it. But here's my next problem: when I'm feeling good and have been doing ok I think I don't need my medicine anymore. After all, it has healed me and I no longer have psychosis. I have heard of many people that think this way. The fact is that my psychosis will never go away no matter how badly I want it too.

The reason I stick with my medicine is I have a loving family that would lasso the moon if I needed it. I also have my sweet daughter. I want to be the best mother to her. I want to be a good wife to my husband. When I'm having a severe episode of psychosis, I'm no good to anyone. It's scary not only for me, but for the people around me. I also have to think of myself. Selfcare is important for anyone to maintain good mental health. Selfcare can be anything from taking a walk, getting a manicure, reading a good book, etc... But for me, selfcare is taking my medicine. I feel good taking my medicine. Although some symptoms are still there, they are way less intense and much more manageable. I can be in touch with reality and it makes my mind clearer.

"Medicine is not only a science; it is also an art. It does not consist of compounding pills and plasters; it deals with the very processes of life, which must be understood before they may be guided." - Paracelsus  

Dear Psychosis, Why me?

 

    Dear Psychosis, 

        Why me? My life was normal growing up. My parents were amazing people, raised my sisters and I in Church (Dad's a preacher). We had game and movie nights, they took us on family vacations, we got to go to summer camp every summer. Mom and Dad both worked very hard so that we could be comfortable and have everything we would ever need. We looked like the cookie cutter family. But, like most preacher's kids, I felt as if everyone expected me to be perfect all of the time, which was a heavy burden growing up.

    When I was 18 I guess my delusions and paranoia started, I felt as if everyone could read my mind. I was no longer safe being quiet, because now everyone was in my mind and watching. They were seeing me mess up. They could see and hear all of my sins. I couldn't think of a curse word or fantasize about my crush. I couldn't think negatively. Everyone would think I was a nasty, ugly person. But I held on and didn't really ask for help because I thought this was normal. I got to the point where I couldn't let anyone hug me or touch me. My own mother's hugs were no longer appealing. The only person I could go to was my twin. Something about her touch reassured me everything was ok. We didn't have to talk, just a hug or holding hands did the trick. 

    After high school I went to college for about a year and a half before deciding it just wasn't what I wanted. I had been in a 2 year long relationship and that ended. Heartbroken, I decided I needed a change and an escape. I moved in with my great-grandparents in Indiana. I knew as a Tennessee girl that this was what I needed. I was scared, yet excited all at the same time. I hadn't known anything other than my parents' house and their rules. I didn't want to leave my twin, but I also knew I wasn't abandoning her, that I would come home for visits and holidays. I did feel bad though she was still at home. I wasn't sure what to do with my newfound freedom, but I ended up taking care of my great grandparents for a few months before eventually moving in with my aunt and uncle. I got a job at a bookstore and made my way up to inventory specialist and back store manager. I also made some great friends at the church I was attending, including the amazing man I would eventually to marry. 

    After a year of being married, our jobs were no longer there, we had been let go and our apartment lease was up. We decided we were going to move in with my twin sister and her husband in Tennessee while we got back on our feet. Of course, they took us in and put up with us, because they are wonderful people. My husband eventually got a job in Kentucky. He found us an apartment and a good church family. We were back on our feet. Not to long after that we found out I was pregnant with our sweet and sassy baby girl. 

    I was 24 years old the year she was born. The Year of hallucinating. We were so fascinated with the bundle of joy we had brought into this world. She had some minor complications that put her in the NICU for about a week. I was an emotional wreck with hormones, pumping so she could eat, and leaving the hospital without her. My Father-in-Law came down to help for about a month after she was home. Between my husband, father-in-law, and myself, I got to get plenty of sleep - more than most new mothers. My Father-in-law was a Godsend. But when he left I was lost, I was left alone with this baby. "How can I do this without all the help?" My husband was working to support our small family. I felt as if I was falling apart. I came into Postpartum Depression hit like a truck, I couldn't stand to hear her cry, I just wanted to be left alone. That's when I saw my first spider. As soon as he showed up, he would disappear. I thought that was weird, but also thought I was just tired. It continued for a while. I eventually told my husband, but he didn't really think much of it either. I eventually learned to love my sweet girl with all my heart, and the spiders eventually went away.

    The Day my husband lost his job. I had just packed up all of our Christmas stuff later then I usually do. He came home and told me what had happened, and it didn't help that the next day the whole word would shut down because of Covid-19. I was working a part-time job as a janitor at our church and we knew that wasn't going to cut it. So we both started looking for jobs, but in a pandemic that's not easy. Our friends were looking for us as well. One day a friend said they were looking for someone to be his medical assistant. So he recommended me to his bosses and I got an interview. They offered me the job and I took it. I would be working for a mental health clinic. I loved my job and the people I worked with. But I had a hard time looking the owners in the eyes; it was like they were looking into my very soul. Because I worked with the clinic I got to be seen there. I had some depression and anxiety creep up on me from the stress of my new job. I was overworked and the managers never bothered to train me. I had to figure everything out on my own and with what little help my friend, who was the nurse practitioner, was able to provide. I was put on Lexapro and Wellbutrin to boost my mood. 

    The Day it all went South. I was hearing someone whisperings my name, I would look around and no one was there. I started seeing bugs again, but there were way more this time. Everyone was in my brain pulling information out. I couldn't look into the eyes of the people I worked with and would often drift into daze. Paying attention got harder. I kept messing up at work. One morning I woke up, got ready for work and was being followed by this huge shadow man. He wanted to consume every part of my being. The only thing I could think of doing was to try and kill myself. I got in the car. I was driving and something in my mind said do it now, I saw a pole and decided I was going to wreck my car in the hopes that I would end all this madness. Luckily for me, I wasn't close enough and the grass slowed me down. I went on to work knowing all I needed was help, for someone to save me. I walked into my friend's office and told him what had happened. He told me that I need to go somewhere safe or to the hospital. I was too paranoid to go the hospital, so we all decided that I would go to my twin sister's house while my medication got changed. Turns out the Wellbutrin amplified and help trigger all of my symptoms. While I was at my twin's house, I was being watched. They never left me alone for more than a minute or two. My nurse practitioner friend would call to check in and see how the meds were doing. I eventually got to the point where I could tell him what I was seeing and hearing and about my paranoia. Later on, I would be diagnosed. My group of people rallied around me. This was a scary situation to be in and learning to deal with symptoms was just the beginning. My meds eventually kicked in and my symptoms got better, but they have never fully gone away. Through therapy and learning to cope with my symptoms it gets easier sometimes. 

     I'm still very new to all this and have my bad days, but I have the best support system anyone can ask for. I feel like sharing my stories and feelings that might help someone else struggling in similar situations.

    There is hope and there is light even if we can't see it yet. Some people will never understand me or what I'm going through, and that's ok, they don't have too. I'm working on me, there is no healing from this disease that I deal with daily. So, I just have to take it one day at time, because the world still needs me. I'm not done yet.