Patients Behavioural disorders / Mental illness
Someone to talk to/offer advice
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Hello, this is my first time saying anything here, before I was just reading other's stuff. I signed up and made an account here in September when I was feeling like I wanted to die, I wasn't brave enough to make a post like I wanted to though. I got this account, cause I wanted help, and to be able to talk about my problems, without being a burden. I didn't want to be the therapy friend who's only and always asking for advice and crying.
I guess I want to introduce myself a little, give some background to start. Hi, I go by ShyPanda here. I have a mental disorder called Pandas, which is basically extreme ocd, anxiety, adhd, and depressive moods. It comes from strep when your body accidently fights off the wrong thing and ends up attacking your brain. Pandas also affects your learning ability in interpretation and one of the big symptoms for it is if your handwriting suddenly gets really different and messy. If you catch pandas fast enough it can be more easily treated with medicines and stuff before it gets worse, but unfortunately that didn't happen for me.
I got pandas when I was eleven. I was once a boisterous, happy, confident girl, but I went on a trip and got sick, and when I returned I was a totally different person. I was worrying, crying, and freaking out about everything. I was scared of regret, of upsetting people, or making even the smallest decisions like McDonalds or Wendy's. When it first happened, my mom and dad let my talk to them a bit, but soon grew annoyed (at least from my perspective). Ocd really affected me especially in me always feeling like I had or being afraid I would have to use the bathroom. I was so sure there was something wrong with me, I thought it had to do with my urinary system though. I tried to ask my mom and dad for help, ask what their advice was, but that just got them mad that I kept bothering them, and they said some really mean stuff to me that still haunts me today. With my worrying and sadness my mom was so sure it was nothing, and told me to just get over it and stop thinking it. Through time they would continue to get mad at me for trying to talk about my feeling, my mom said I was a burden, and making everyone else sad, she called me the problem child. My dad was a lot more caring but even he had his limits and in 7th grade asked me to stop talking about my feelings around him all the time. That paired with all the stuff my mom had told me, and I decided to be quiet almost completely, no more sharing my feelings or thoughts, I was only a burden. So I'd only talk when I asked how peoples days were, or I talked about school. I kinda forgot how to talk to people, and even if it wasn't feelings I was afraid of them saying I'm a burden. So I really only spoke when spoken too, and so started talking to myself and my reflection, which my mom would then yell at me for.
Then after being undiagnosed and suffering for three years, I was failing school and my parents finally believed something might be wrong, so at 14 I got diagnosed with pandas. It should have gotten better from there, but I didn't understand what having a mental disorder meant, and thought that I was stupid. My parents then told me it was fine if I failed some tests cause that would get me advantages cause of my learning disability, and to me that was confirmation that mental disorder meant I was stupid. Besides from my parents occasionally telling me how helpless and dependent I was, that I'd never make it on my own, life didn't really change. I became more depressed, still repressed and hid my thoughts and emotions, decisions became more scary. But with everything people said to and about me, my self hate grew and self worth shrank. I told myself that I couldn't think for myself, that whatever mom and dad says is truth, so if they say I'm a burden, that I have an interpretation issue, that I'm stupid, brain dead, then it must be true. I then told myself I would no longer live my life for myself, there was nothing I wanted, I didn't deserve anything, I wasn't even worthy of being called human. I would live my life and be whatever mom and dad wanted, I was simply a tool.
When I was 15 I got into a play, I already had enough stress, but my mom was really harsh and stern with me. I needed to get the repressed feelings out, I didn't like how life was going. I tried talking to my reflection, I never saw it as me, they looked so much older than I felt, so getting advice and talking to them usually helped. It didn't though. I needed to talk to someone, but it couldn't be mom and dad I was to scared, but I was also afraid that if I told anyone that I would get sent away from my family. So at a summer camp I decided to talk to some nuns with the hope they couldn't get my sent away, and then had the smallest confidence I could talk to my parents. I tried to talk to my mom, but I wasn't strong enough, I did manage to talk to my dad though, and it felt amazing to finally get out. When my mom found out, she got mad at me though, she thought the medicine I had been taking had made me better, turns out I was just hiding everything, and she was mad I couldn't talk to her, which just made me more scared of her. So it was a success, but also a failure and I pulled away again.
Then a year later when I was 16, I went to the same camp gain, and decided to try again, but I wasn't even going to try to talk to my mom first. I sent a long letter to my dad. Explaining my feelings and fears, without the fear of being face to face. He replied, and once again I felt great. He said he's try to remind mom to be nicer, and so I returned home feeling better, but never talking to my mom. I finally felt like I wasn't 11 anymore, but I definitely didn't feel 16, 14 matched more how I felt. So three months later, after five years of keeping to myself, I finally started therapy,
But we all know healing isn't fast, easy, or linear. Therapy helped me a lot, but I still could talk to my mom or even stay untense in a room with her, and I didn't talk to people still, am still afraid of being a burden. I finally got some friends, but I stayed in the back and didn't really give them the chance to know who I was.
I was always afraid of being 18, when I was 18 I was supposed to know who I wanted to be, what job I had, I thought I was supposed to have my life figured out and be sent to collage .I told myself I had till I finished 12th grade to do things I enjoyed, and then it was time to be an adult and adults didn't have time to draw or do what I wanted. So when I turned 18 I started to panic, having a crisis cause I was nowhere ready. I wanted collage, I wanted to be independent one day, but I was still afraid of leaving my family, or the responsibility, and my family still told me I was dependent and wouldn't ever have to leave. So when I turned 18 I started to panic, I was going through a lot still, and hadn't really improved at all at my self worth, so started thinking about potentially dying and being done with the pain. I only told one of my friends about it, she threw my a hotline, but I didn't call it. I felt like such a failure, no collage, not divers license, no job, no plan. In august my family was at a beach and I stayed home, I was lonely and my thoughts were getting to me. I was past my timeline for being 18, I didn't know who I was going to be, I wasn't sent away, I just had no idea what to do. It had been two years since I gave my dad the letter, I had talked to him a bit about feelings, but I was still afraid. So when they got back from the beach I asked to talk to him, and I gave him a box of recordings I made across the years of all my feelings, or my diaries, My letter those years ago was good, but it wasn't the half of what I was feeling. After talking to him I felt another burst of better, and so didn't feel as keen on dying, and put it to the back of my head.
I'm about to be 19 now, but I still feel 14, and I'm still panicking about having nothing figured out. I can't take people calling me 18 or an adult, it hurts and causes me to panic more. I still don't see my reflection as myself, but I know it is and so I hide from it so I don't have to be reminded about what a failure I feel I am. I just want to be a kid, but I'm technically not, I still hate making decision, I still feel I'm a burden, and I still don't know how to have a regular conversation with a person. The voices in my head just won't be quiet, and I have to use distractions to tune them out, and forget about my life, it's the only way I can manage. I have so may things I want to do, but I'm just always depressed and not motivated and I don't know how to make it better.
We just got out of a multiple day snowstorm that knocked out the power, and it was awful. I wasn't able to get most of my distractions, it was so cold, and I was spiraling so much. The voices were calling for self harm and death again but I didn't want that, I just wanted it to stop. I was able to restrain myself, and fortunately the power came back this morning and I sped for an outlet, a distraction. But now I just feel so awful again, and I just don't know what the point of anything is. I want to accomplish these hobby projects of mine, but I'm just never motivated, I'm always crying, and dealing with self hatred. I missed my therapy appointment yesterday -_-
So for some reason getting this all out again feels good, talking to someone , I hope this wasn't too awkward or bad. So, thanks for listening/reading. Got any advice for my pretty general issues that feel like they shouldn't cause me as much pain as they do. How do I motivate myself or just push myself to try? Any good advice for working on my self worth, talking to people? Any advice of good things to try when I'm feeling panicky or spiraling again?
Once again thank you <3
You've given me a lot to unpack here. Strap in, because I tend to write long posts. Its very exciting to be able to talk with someone who has PANDAS. It is not a condition that I get to interact with often. The first thing I'd like to say is thank you. Thank you for being brave enough to reach out and make yourself vulnerable. I'm so glad you decided to share with us.
Please keep in mind that I'm not a professional but I would like to share with you what I have learn through research and life experiences. I will return your introduction in kind. My name is Kai, I'm 36 years old and I have treatment-resistant Bipolar Disorder 1 with mixed features. I also battle PTSD. So trust me when I say that I am keenly familiar with some of the symptoms you listed.
Let's get one thing straight... You. Are. Not. A. Burden. There are people who love you, who are glad you exist, and who would let you come to them in a time of need. Sometimes life is very heavy and we need help to carry it. There is no shame in this. I hope that you can make a habit of telling yourself "I am not a burden", it seems silly but words have power.
Let me tell you a secret, you don't have to have everything figured out by the time you're 18. I still consider 18 to be very young. Everyone develops differently in life, so some people are "prepared" for life on their own at 18, some are not. Most of my friends didn't find their footing until their mid-to-late 20's. I didn't move out of my childhood home until I was 24. So its OK to feel the way you feel about your age.
My first tip is to make extra effort to get to your therapy appointments. I can totally emphasize with how difficult it is some days, to drag yourself there or to beat down the anxiety of going. But therapy is important for equipping you with the tools necessary for dealing with life and all its stressors.
My second tip is to learn mindfulness meditation. It isn't a cure all and, admittedly, it isn't for everyone. That being said, I have found great benefit from learning mindfulness. This practice is so easy to pick up and there are endless resources online that can help teach you. Mindfulness teaches us to insert a tiny pause in our overactive minds. And thats a very useful thing.
I am like you, I require a lot of distraction from my overactive mind. If I don't have these distractions, the thoughts in my head can become overwhelming. Distraction aren't necessarily a bad thing, they can make one very productive, but distractions do not address the issue. I like to challenge myself from time to time by sitting with myself without any distractions. This is where mindfulness comes in handy.
I also really struggle to motivate myself. I have a ton of things I would like to do but there's no drive to push me along. For me, this is mostly a symptom of my Bipolar Depression, so its hard to combat. I rely on medication to treat this. I wish I knew of other ways.
In closing, you still have a lot of time to figure out life. You're not a failure just because that time isn't now. Don't be afraid to lean on your friends if you need them. True friends will let you know they are willing to be there for you. It seems like writing has made you feel better, so maybe pick up the habit of writing more. Journaling is a great way to keep track of your moods.
My heart goes out to you as you wrestle with these issues. It takes a truly strong person to endure the things we endure, so please be proud of yourself. I hope you are able to find something useful in this giant wall of text!
Oh Kai said it all. With this being your first post it's a very good post. Iti tells us who you are and how you feel so we can get to know you and keep in touch. I've not heard of PANDAS. It sounds awful. I'm so sorry your going through this. Hopefully being in this group will help you get over the hard times. You can get on anytime you want and scream for help and someone will be here for you.
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