Locked-In Syndrome

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Locked-In Syndrome
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    Post

    What do you exactly mean by 'acute'?

    #AcuteDystonia
    Do you mean it come and goes? This is what I have in my hands and fingers.
    My feet are the main problem.
    I've been diagnosed by 2 neurologists in 2 different university hospitals to have a primary multifocal distonia, whatever they mean by this.
    Dispite of this I got the label 'very serious conversion disorder with tetraparesis' even if the cramping attacks completely stopped after taking less muscle relaxants (now more than 2 years ago). In one of the university hospitals you can find the only existing unit for people with a chronological disease, where you're supposed to learn living with it. I was there 6 weeks starting with 1 cramping attack every few days and going home with about 3 every day.
    I was really close to asking for euthanasia. All papers were ready. A few days before I left, the relaxation specialist of the unit told me (after I had to take the initiative, because nobody told me he could help me with the cramping) that my muscles react because of the high muscle tension level I've been having all my life (to keep all joints in place because of my hypermoility). When I allow them to relax too much, they 'panic' because I could 'fall apart' and react by blocking every possible movement and joint. In these attacks I only could hear and feel, but I couldn't react on whatever way because I couldn't even get my eyes or mouth open and breathing looked more like hyperventilation because the muscles between my ribs refused to move. It seemed a bit like a 'locked in syndrome'. So after I got home I reduced the muscle relaxants by half and (of course together with the neurologist)...no more cramping attacks ever since. And this conversion disorder still sticks to my files. 😠
    In this special unit you only get group therapy (because of the budget, I think) and everyone I've still contact with who was there when I was, is still unable to talk about their experiences there (too difficult). It's been three years now. So the unit doesn't really work.
    That's why I start studying clinical psychology soon. My dream is a multidisciplinary team - specialised on chronical ill people with pain problems - with a physical therapist and an occupational therapist so we can work on the things this specific person needs to be able to have an easier life.
    The orthopedic surgeon I see told me in August that I had 3 choices:
    1. Stop walking immediately
    2. Keep walking like I do now (on the outer side of my feet, even with splint) and ruining my ankles beyond repair.
    3. Have the same surgery I had 2 years ago, which is already ruined by the dystonia and 'buy' some more years of walking.
    It all results in the same: I end up being stuck in the wheelchair I now only need for distances of more than 0,06 miles. In my apartment I walk, using every wall, cupboard, door,... to stay balanced.
    The only question is when, not if.
    We call these situations "choosing between the plague and the cholerae".

    Post

    The hidden and beastly nature of chronic ill health

    I have dealt with bouts of poor mental health since the age of about 12 and I am now 35. Around 5 years ago, it started to manifest into my physical body and I became physically unwell. Double whammy! Through all the traumas and trials I have overcome and faced, nothing feels worse than a body that fails to function properly.

    I feel trapped in a pretty looking cage of fake Facebook smiles and debilitating silence. Only those few who I am really close to know how it affects me. I also know that is not that people don't care, they just don't know what to say.

    I rarely see anyone outside of a work scenario, where my 'strong, perky okay mask' is firmly on. Aside from my son, boyfriend and best friend, I don't get visitors. Chronic pain and the mental monster that accompanies it , is hardly an attraction worth visiting. Maybe people just cannot cognize that my life seems to be lacking in connection outside of the web hemisphere.

    It almost feels like locked-in syndrome, but I am still able to walk and talk like an everyday human bod. So ambitious, yet bound by the bondage ties of complex post-traumatic stress, shot nervous system and sluggish mitochondria.

    Post

    SUICIDE? End the pain?

    Imagine waking up after your bid to end your life, on life support with locked in syndrome. Were your fully conscious, can feel everything but unable to move any part of your body and being kept alive by machines. The staff who look after you hate you as you put yourself there, going against everything they believe in, they are trying to save life's. Do you think they going to make your life comfortable......

    The problems you are facing now can be a whole lot worse.

    Imagine facing those problems with brain damage
    Or may be being paralysed
    Or totally alone with not a sole to care for you.
    Or all of the above.

    I don't mean to harm anyone but I'm try to get through to anyone reading this, your problems seem overwhelming right now, if they do take a step back, fuck what some people think.
    Yes lose of réputation hurts, life has to hurt for us to learn some lessons, don' t be hard on yourself if you don't seem to learn/achieve at the same rate as your peers/ friends, mistakes make us better.
    A lesson you may have learned in the school playground, someone else might not understand that until they are old enough to retire and vice versa. We all live pretty much the same life in general but experience things with different view points and at different stages of our life's.
    So try to find someone anyone to talk to, hell with internet that's an easy one, somebody will be able to relate, and just might be able to help.

    Try treating yourself as if you're caring for someone you value, treat yourself like you wish your parents had treated you, gently when you make a genuine mistake and a bit harsher when you are avoiding responsibilitys.

    Me, I'm a chump, that's right my friends though they never were really good friends now refer to me as a suicide chump. My family are angry at me behind my back saying I'm a spoilt brat.
    My only treasured asset in this life was my intelligence which has taken a bit of damage as my IQ has dropped 10%.
    One other thing I want to add is my IQ was always high I hardly ever made mistakes but because of that I missed so many learning opportunities, so cherish the mistakes you make they inspire creativity, they stop you getting bored and taking things for granted, people don't think your a weird robot person etc.
    So I believe I'm qualified to talk frankly bout this shit. But I'm lucky by being my attempt was thwarted by kind strangers who took time from their life's to save my life, I now have learned that if I ask and work with other people that they can help minimise the pain that drove me to try to take my life, something I never believed possible.
    So please reconsider talk to as many people as you need, there will be someone somewhere at sometime who can change your miss guided beliefs take have brought you here.

    AGAPÉ =(UNCONDITIONAL LOVE)

    Post

    Not even sure what to think anymore

    Not sure if I’m losing feelings for life at this point. I keep being pulled deeper & deeper into a nothing feeling. I never had parents that loved me. My father impregnated my mother when she was 16, he was 26. He abandoned me as a baby. My mother used to cut herself in front of me. She always told me that “If abortion was legal back then, you wouldn’t be here.” After I sought out my father when I left my house for college-I discovered my father was a famous scientist & he is a narcissist & loves that people love him. He told me in a fit of rage, pointing his finger in my face: “Your mother is evil! You are just like your mother!” So that father/daughter relationship wasn’t going to go anywhere. I’ve pretty much been the person to make others smile, to make them feel happy. That’s what people have always said. I’ve worked hard to make money & men always tend to use me for that. I never understood why people put value on money so much. I just always wanted to be loved. Probably the greatest thing I ever had was my best friend. I could tell her anything & she accepted me just the way I was. She was hit by a driver who was drugged up back in 2016. When he hit her-he left her on the street to die. He was later arrested. She suffered a stroke, quadriplegia, brain injuries, cardiac arrests & locked in syndrome because of the hit. She died 11 months later in 2017. The driver is free because too much time passed between when he hit her & when she died according to the state attorneys office. So he is free to do it again. Now I have no one to talk to. I have a husband but I can’t talk to him about things. He doesn’t understand nor wants to understand. He is blessed with a family that loves him unconditionally. I couldn’t believe it-but I got the nerve to finally tell him I have been thinking of committing suicide. I don’t think he believed me because he said: “well do it fast so I don’t have to suffer anymore either.” I feel bad writing this here. I’m thankful I’m protected by anonymity. Well, I just don’t feel like living anymore. It’s getting to the point where I feel numb about it. I think of ways to do it. I know I won’t be missed too much because I think if the people in my life now & how they don’t reach out to say hello even. Even when I’ve tried & tried many times myself. I’m exhausted with trying. I’m exhausted with trying to please everyone else. I’m a pretty quiet person. I just hope that my silence will go on forever. I don’t even understand today’s society. How important people think it is to take selfies with expensive items to impress others. They should go live in Africa & be humbled. I just have lost interest in this life. It’s really not that beautiful behind the aesthetics. It’s a place filled with a lot of sociopaths, narcissists. I honestly can’t find any excitement in me anymore. I have no one. I’m sure anything is better than here.
    #SuicideIdeation

    Post

    Thinking about how life has no meaning

    I’ve come to the realization that life really has no meaning. I never had parents that loved me, so I have no idea what that is like-to be loved unconditionally. I feel most people have used me for whatever resources they have needed. I’ve always worked hard for myself & it’s incredible how many men especially want to take anything I earn. Money doesn’t mean much to me, but it sure means a lot for most. I find it interesting how important taking a selfie with a Prada purse would be for many-to post it to Facebook, so others can view how “important” that person is. There are people in Africa dying everyday-starving to death. When people claim how blessed they are for “choosing” their parents before they were born, I don’t understand that concept at all. And I certainly wouldn’t choose a life of failure straight from my birth. There are children born into war, and they didn’t choose that. There are babies aborted when only months in the womb-they didn’t choose that. If by chance I chose a life of being completely unloved, I must have been on crack during my past life. Or maybe I was such an evil person in my past life, God is making me pay via a life of having no parents who genuinely even care about me at all. My mother who hates my father-always told me: “If abortion was legal back then, you wouldn’t be here.” My father, a famous scientist, who abandoned me when I was a baby, when I found him again-he told me how evil my mother is & how “you’re just like your mother!” My best friend was murdered by a drugged up driver & left for dead. She was the kindest soul I ever knew. We fed the homeless together countless times-she was so nice to anyone that ever met her. The drugged up guy who killed my best friend-was arrested for leaving her injured on the street. She died 11 months later from those injuries/brain damage/quadriplegia/locked in syndrome/stroke after stroke. But he is now free to drive drugged up again & could do it to anyone....again. So I’ve pretty much lost confidence in human life. I feel there is no meaning. If there is-I definitely was excluded from that life memo. I’m feeling numb to the world lately. I think we’re all equal & no one is better than the other. Just some people get lucky here and there. Others just got handed a rough life from birth. Some were born with a silver spoon in their mouths & their families love them unconditionally. Or maybe they get bad luck too from time to time. Anybody else think of life like this? #Life #meaningless #hopeless