My best friend called me the other day. We talked for about an hour and a half. She had heard a song on the radio that I supposedly liked to sing while drinking. At the time of the conversation I couldn’t remember the song or singing it. This isn’t unusual for me because I have blocked out quite a few chunks of time. I know when a song I liked was played and I was drinking I thought I sounded like the singer and would sing very loud, at one time singing over a lead singer’s voice in a cover band. For the record the people in the bar thought my rendition of “Home Sweet Home” was better. This was probably not always the case.
I went on YouTube to look up the band and the song my friend mentioned. It was Steel Heart “I’ll Never Let You Go”. The guy had a set of pipes! I cringed and could only hope I hadn’t tried to hit those notes publicly. I know that I did. YouTube gives other suggestions when you look for a song. Down the rabbit hole I went.
I smelled beer and leather, I started to feel like I was going to throw up, my hands were shaking and I was in a cold sweat. I couldn’t stop it. That night there were dreams that were actually memories of times I didn’t want to remember. In the dream I felt drunk and I didn’t want to feel drunk, I wanted to go home but they wouldn’t let me. There was the usual blood, sweat, tears, and the uncertainty of sex. I’ve been in a deeper depression (if possible) and stuttering more since.
Some Doctors will say that Conversion Disorder patients will recover then have an episode now and then under stress. But for some of us there is no recovery, it’s always there waiting. There are other issues that factor in. If you have another mental illness (Bipolar Disorder) than it’s more difficult to treat. If you did not get help within a certain time frame it’s more difficult to treat and if it presents in a neurological way like tremors or stuttering it’s close to impossible to treat. That doesn’t mean you can’t try but don’t be too disappointed if Therapy and Medication do not work. I’m talking about myself but I am not the only one.
These same factors apply for Bipolar Disorder. There are so many variables that can determine your response or lack of response to treatment. Most people do not understand this and think that you don’t want to get better.
I didn’t wake up one morning and decide that I want to be a non-functioning burden who cries most days and will not have a “normal” life. When I was younger I imagined I would be married by now with my own home and children. Instead I live with my Dad, take 6 medications a day, try to deal with having these issues and a number of very serious health issues. I also take care of my Dad because he’s on dialysis three times a week and 73 years old. I do it because he never gave up on me, even if I’m ready to pass out myself, he comes first. My twin never comes to our house and my older brother drops in once in awhile. My Dad doesn’t visit his grandchildren because in his mind he feels that if my Mom can’t see them then he shouldn’t be able to either. Survivor’s guilt. It was 9 years in February and neither one of us is over it because we witnessed the entire ugly scene. My twin decided to stay home and my brother was in jail.
Today my twin told me that my Dad and I have no empathy for other people. She also said that friends come before family. I kept my mouth shut as usual because I’m tired of fighting with her. I’m pretty much done with the entire family. Even my Dad has been cruel lately. He thinks it’s a competition, who is sicker, I’m not playing the game anymore. He doesn’t realize that he’s 73 and this sick, I’m 44 and as sick as him. There’s a difference. I’m easily influenced by the moods around me. I need to be around positive happy people. Or at least in the sunshine in a warm climate with a pool and a float.
I thought I had reached a point where I knew what to expect when I am unable to handle stress, emotions, memories, or situations that trigger Conversion Disorder.
It started with hand tremors and progressed to stuttering. I could still be understood but it took patience, something most people don’t have these days.
No one noticed when my stuttering became “gibberish” so I didn’t say anything. It’s been like this for awhile now. It sounds like I’m saying all vowels “aeiou” repeatedly, in a strange voice and still stuttering them out. But they are not words.
This morning I woke up stuttering. I don’t know what set it off and it sets the tone for the entire day. I was standing next to my Dad in the kitchen, I just woke up, and I tried to tell him I bought sugar and “aeiou” came out. I tried again and again. The more frustrated I became the worse it got. To my surprise my Dad said “Something isn’t right. You’re not saying words anymore these are just noises. What the hell is going on?”.
I had to write down in a notebook that it had been happening for a long time but no one noticed and I didn’t want to tell anyone. I also told him I’m scared. He looked so sad and angry at himself for not noticing. I don’t blame him. He’s almost deaf in one ear and his other ear is blocked with wax. (EWW!) Plus he’s going through enough on his own.
He asked if my sister had noticed and I didn’t write or say anything. There was no point. She talks to me when she needs something.
It’s always been hard for me to talk to humans, animals I have no problem with at all. Now it’s even harder and makes me wonder if it’s worth it anyway.
If there is one thing that bothers me more than anything, it’s when someone tells me what they think I need to do to “get better”. What I hear is “you’re not trying hard enough”. I then start to think that people around me are thinking that I don’t want to get better. That doesn’t bother me it breaks me.
I remember a time when my Dad would come home from work and give us “foot rides”. He had to wear steel toed boots to work and he was on his feet for 10 hours a day. He didn’t care how tired he was when he got home, I would wrap myself around one leg and my sister around the other. My Dad would then drag us around the house. After he would give us Rollo’s that he bought from work everyday just for us.
I remember the tire swing he made us in the backyard. I spent a lot of time by myself watching squirrels, chipmunks, butterflies and every other kind of creature while my Dad did yard work. I remember watching my Mom cook and feeling so calm as I watched her hands move.
If anyone thinks that I wouldn’t want those feelings back than they have bigger problems than I do.
Everyone pushes me to go to Group Therapy. What people who have never been to Group Therapy don’t understand is that where I live everyone is put together. Your group could have someone similar to you or a group largely made up of people that can’t function as well. I’ve been to many different Group Meetings in my area. Something scary always happened. Maybe I bring bad luck. The last straw was the man who pulled out a butcher knife and held it to a staff member’s throat. I was standing next to him and was told not to move. It was fun when the S.W.A.T. team showed up pointing their guns at him and me!
Good thing I’ve been peppered sprayed before because that also happened at another Group Therapy session. I wasn’t sprayed I just got the residual effects. So much fun! I think after about Group number 30 I quit. It’s worse when you’re hospitalized. Not only is there mentally ill but they also put you with people who are detoxing. This has happened twice.
Stop telling me what you think I need to do to “get better” and try listening to me or, now I know this idea is out there but how about spending some time with me? Or you could stop ignoring me and judging everything I do and say.
Just a suggestion that will never be seen or heard.
PEN OBSESSION (HAVE TO BE ERASABLE I MAKE MANY MISTAKES)
This is where I address the Elephant in the room. I admit I am somewhat Obsessive Compulsive about specific topics. Topics like Bullying, Right Fighters, People who try to instruct me on topics I’ve either lived through or have already researched the death out of. How I should stay sober, anyone who hurts animals or children, abuse of any kind, people who don’t listen they just wait for their turn to talk. So I’ll tell you what I know is true because I’ve lived it.
Along with a Bipolar diagnosis, came the frightening words “Psychosis” and “Catatonia” you can add that to the Conversion Disorder diagnosis. It’s all kind of related in a way.
I was in a Depressive State for well over a year. I wan’t leaving the house, I wasn’t talking much and when I did I stuttered badly. I would also tap my hand against my head lightly and repeatedly. My leg never stopped bouncing up and down. I fidgeted with my hands. Then at times I was completely still for hours and wouldn’t hear my dad call my name. I would also sit in the bathroom with the lights off. I would have a beach towel to muffle any noise while I rocked back and forth wailing for hours.
One day he walked into the house to find me standing in our kitchen with a butcher knife pointed into my stomach while I stared out the window. This is what he told me after taking the knife away and shaking my shoulders to get my attention. When I finally looked at him I couldn’t understand why he was crying. That was when I decided I had put him through enough.
TALKING WITH MY DOCTOR (IMPORTANT THINGS TO KNOW)
After the knife incident I made an appointment with my Psychiatrist, Dr. T. I always bring a notebook and a couple of pens (pen fetish & they always run out of ink) with me. One reason is because I have memory problems or “Cognitive Issues”. A plethora of Doctors had grouped together to decide that the cause of these “Issues” boil down to a number of things. The “Encephalopathy” that was causing mild swelling in my brain from a supposed infection in utero. Celiac Disease also causes cognitive problems and just going so many years without a diagnosis causes problems.
What no one told me was that a diagnosis of Psychosis had been made at one point and so had Catatonia. When I came across this on my own I was scared. I didn’t know what to do and it honestly set me back.
When my sister and I were growing up we both knew it was a 50/50 chance one of us would end up like our Auntie Donna or Uncle Jimmy. My sister was more disgusted by the thought than anything. She was ashamed of what people would think. I was scared of being abandoned and no one loving me anymore, not even my sister.
Uncle Jimmy wasn’t too bad. (Diagnosed Paranoid Schizophrenic at 17) He didn’t want to take medication or live in assisted housing. He wanted to use drugs instead and sleep where he chose to sleep. He had a Social Worker that he checked in with on the same days every month. My mom was the Emergency Contact for him. She was the Emergency Contact for every lost soul, unloved child, or damaged psyche. It’s how she was. Like me, she felt too much. It also took too much from her emotionally.
Auntie Donna was a different story. She had no filter. She was loud and her speech sounded slurred due to her medications. She showed up whenever she wanted to. She would call you “fat”, she was extremely paranoid about many things but mostly her doctors. She always thought they were trying to poison her or rape her. She for some reason thought every man she met was trying to do the same. I’m not sure if that’s something from her childhood or not. One thing that side of the family was good at was their secrets. My mom would spend money on food for her only to go back and find it infested with maggots. The hardest part for me were the insults. (Diagnosed Paranoid Schizophrenic from age 20)
When I was eventually diagnosed as Bipolar at 36/37 I could almost hear my sister’s sigh of relief.
WHAT THE HELL IS PSYCHOSIS OR CATATONIA EXACTLY? WELL I’LL LET YOU KNOW NEXT TIME. IT PROBABLY ISN’T WHAT YOU THINK IT IS.
I’m a bitch, I’m a bitch oh, the bitch is back. Stone cold sober as a matter of fact. I can bitch, I can bitch cause I’m better than you. It’s the way that I move, the things that I do. ( Thank You Sir Elton John for reminding me it’s okay to stand up for myself.)
My Blog is about living with mental illness, stigma, addiction, and my own stories and personal struggles over the last 30 years and going forward.
It makes me less than happy when a person makes zero effort to read any other posts or the About section before leaving a 1,000 word comment either “dumbing down” a Psychiatric Procedure, or their theories on “Religion”, “Recovery”, and “Being Cured”.
When and if I comment I always try to read about the person I am making a comment to. That way if Jane/John is a Catholic/Christian/Scientologist/Baptist/Satanist/Atheist or worships birds like my dad I’ll know before I start cramming anything down their throats.
I also look for any diagnosis that’s been stated, medications, and treatments tried. If asked I’ll offer an opinion on something I know.
Here’s the rub, yes, I have a million and one diagnoses, but every Doctor agrees on one thing. I’m knowledgeable about all of my diagnoses. Most Doctors tell you NOT TO LEARN ALL ABOUT WHAT YOU HAVE. The problem is everything I have, from Psychiatric to Physical has been odd and rare for some reason. I have HAD TO EDUCATE MYSELF OR DIE.
If I had just let my Kidney Failure be “chalked up” to something “idiopathic” I wouldn’t be here right now. If I didn’t fight for further tests no one would’ve known exactly how bad things were. It took a particular test involving a chemical no one wanted to use on a 42 year old woman. I demanded they do it. Once they found out that I could no longer have children and would sign a form they were a little more at ease. But I will never forget the looks on their faces while I was on the table.
One of them had a daughter my age. He stood at my shoulder with his hand there the entire hour it took. The image slowly took shape. As I watched things progress on the screen and the technician squeezed my shoulder, I knew without him saying anything that something was wrong. I had taken some Biology in High school. I knew that a person’s kidneys were supposed to be almost equal in size or close to it. The man touching my shoulder stopped, he needed to turn away and clean his glasses. I’m not sure why I had such an affect. I did know that my left kidney looked the size of a gallon of milk while my right kidney was the size of a grape. It didn’t take an expert to tell me it shouldn’t be that way.
What I didn’t know was that the Doctor treating me at the time was going to let me continue without having stents in. The technician called him immediately to let him know that I no longer had a viable right kidney and the left was working at 73%. In 24 hours my Creatinine level had gone to 2.99 without the stents. The Doctor argued with the technician and continuously told him he must be wrong. 5 hours later I received a phone call at home from my Doctor. He told me to go to the Emergency Room immediately, I needed to have the stents put back in as soon as possible.
From what I understand, the technician, who holds a degree in Nuclear Medicine, went above my Doctor’s head. Several other Doctors agreed that it was a “life saving situation” and I needed to have the stents put back in immediately. After this I fired the Doctor and found a much better fit. A doctor who didn’t talk louder and slower to me when he found the part in my file where it says “patient is Bipolar”. I never got to thank the technician who put his job on the line for me. So I’ll do it now. Thank you for listening and seeing and understanding when I couldn’t speak.
I have a habit of researching everything I’m not sure of. That and I have a pen and notebook fetish. I like to research. It doesn’t mean I buy into everything I read but it’s good to hear or read all sides before making up your mind.
This is what I did when I made my decision about ECT.
TO BE CONTINUED………
P.S.~ Not my actual scan. Just an example of how it works.