Tired of struggling on, putting on a brave face, and lack of understanding

Posted , 5 users are following.

Hi there

I've posted before in this and other forums about my drug-induced movement disorder from antipsychotic drugs, tardive dyskinesia, and my head injury / cognitive difficulties. I don't honestly know where to turn any more, as I feel like I'm always putting on a brave face for my family who are supportive but getting tired of hearing the same complaints after nearly a year of my illness.

18 months ago, I was happy and had just moved house and was starting a new life with my family in Norfolk. Now every day I fight involuntary orobuccal movementsand dystonia/tics, constant cognitive symptoms such as an inability to understand language/acquired dyslexia (which manifests itself in not even being able to understand the language of my thoughts sometimes), and awful 'mind blanks' / moments where my brain will literally 'freeze' and I'll fight to get it going again. It's like it gets stuck in first gear and goes completely blank. Silence scares me as all I can hear is the 'emptiness' and slience in my head. I seem to have also lost the ability to visualise images in my mind now, so all I see when I close my eyes is just the colours abd patterns made by the light on my retinas from behind my eyelids.

I don't feel like I actually have a life I know or enjoy now. From the outside, I have lots to be envious of; a good job working from home, a beauitiful daughter and supportive loving husband and family, and a family home. Inside every day I sit and crumble, totally depressed at the damage my brain has sustained from a head injury and psychotropic drugs.

I can't see myself living another 40 years or so like this. There is so much to enjoy in life but I find constantly fighting my dyskinesia, cognitive difficulties and covering up my feelings to my family who are fed up with my whinging very exhausting. I just want to stop and rewind, go back to when I enjoyed and actually lived life.

Every day, I just feel I exist. I don't know how people with chronic pain or illness are supposed to keep going all the time without feeling p*ssed off that life has dealt them a bad hand. My family say things like 'life goes on' and 'it will get better' but they don't understand the social stigma of a movement disorder and how much it has affected my self esteem and ability to live/enjoy life.

I'm so unhappy deep down but am not sure how long I can keep up a facade of being relatively positive and optimistic about things improving, when over the past 10 months, they haven't really. :-(

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7 Replies

  • Posted

    Hi.

    No one can possibly understand what you are feeling, especially since it's not a condition someone can see like a broken arm.

    You have to keep going though, there is no other option. Sounds like a bad hand to be dealt alright but you can't loose hope. It's very important you cling onto whatever shread of hope you have left with all your might. You don't want to die. Think of all the lives hurting you would leave behind. Deep scars that would never heal. Self blame for not recognizing the depth of your pain.

    Keep fighting.

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  • Posted

    You can do it and I know its hard for you right now but its true, it will get better, even if that just means getting used to a new you.

    Just because we are poorly doesn't mean we can't live good lives.

    Its hard yes but its always right to keep going, moving forward, fighting everyday not just for you, but for your family and loved ones, and be proud of yourself even for small things,getting up when you could easily stay in bed,never feel alone we are proud of you and understand,God bless x

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  • Posted

    you sound like a fairly intelligent,strong person to me to be going through the fellings you have for such a long time,but its time to seek real help tell your doctor that this isent on and you need to be taken seriously and sent to speak to some1 who knows what there talking about,maybe get some sort of relaxents as well just to take the edge off,stay strong and keep fighting the fight,IT WILL GET BETTERĀ 
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  • Posted

    I know exactly how you feel, nikki. I have a disease called prostatitis, which is dibilitating ! I had surgery 6 years ago to try to improve it, but it only got worse. That was 6 years ago and I have been living with this ever since. I was also happy before this and I ALSO wish I could turn that clock back to a time before this occured. I have to go out places now and try to smile when I know I have constant pain that no one else knows about or can even imagine. Doctor after Doctor has told me that theres nothing they can do about it and that I am going to have to try to live with it. BUT do they know what the prospects are of living with this for another 20 years. Pain so intense that you have no life at all from the wonderful life that i once knew. Suddenly the future doesn't seem to be in existence for me anymore. Yes, it seems as if we were dealt with a bad hand and people say the same thing to me, but they don't know what it feels like to have constant discomfort and pain when I wish I could smile, but can't because I am so uncomfortable in my perrenial area and they have no idea of what I am going through.  The condition I have very little is known about it and nobody wants to talk about it, but I have it and want to talk about it so that maybe sometime and someday somebody will be aware of this disease and help those who are suffering. It's like Cristopher Reeve, he didn't give up. He kept on fighting until the very end to try to make people aware of his condition.

      I would LOVE to talk to you nikki. I know how you feel.xx  Believe me.

      Steve

     

     

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  • Posted

    Hello nikki27791.

    I'm very sorry things have turned out the way they have, I don't blame you at all for feeling completely disheartened. I can very much relate in my own way, but not to all symptoms you've mentioned.

    I just wanted to say, it's only been 18 months since this all started for you - that's not a very long time really - so, maybe a readjustment of perspective to allow for a longer healing/rehabilitation timespan, is what you need to do. You're not well, so you mustn't think it's all going to go away in the blink of an eye. I wonder if there are support groups or meetups in your area for people experiencing situations like yours - they'd be on the internet. Because those kinds of interactions can be a great relief and can give you back that hope and inspiration which keeps trickling away.

    Please, stay strong within yourself, don't lose that sense of purpose, and keep reaching out. All the best.

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  • Posted

    Hi there everyone

    Thank you all so much for your kind words of understanding and brilliant advice.

    I found out yesterday that there is a name for my inability to 'see' things in my mind - aphantasia - and that it was a name coined by a neurologist from Exeter university last year after som research he was doing. Apparently there are people who have had brain injuries that can acquire this inability to see things in their mind's eye (a 'blindness'wink, although I'm guessing my ability is still there somehow, it has just been damaged somewhat. :-(

    My family and friends are my sense of purpose to be honest, particularly after all their strong support, and I don't want to lose their support and love espcially if it means it will make me feel more depressed.

    To be honest, the only other people who have any understanding of how I feel are those in the online communities who have had head injuries or post concussion syndrome, or even movement disorders... I read about one person who commented on a YouTube video on concussion and brain injury that he had awful mind blanks for hours at a time... I can truly relate to this, and not feeling in control of my mind at all sometimes. The worst part is actually feeling my mental processes slowing down, and especially the morning when I wake up - almost like an engine that doesn't want to fire up, in a way I guess.

    The symptoms are just about bearable at the moment, but if they get any worse I'm not sure I will be able to handle my feelings or cope emotionally. Just trying to concentrate is an effort at times, and having to control my involuntary movements etc in public can take a lot of strength too.

    Anyway, I know the only way to keep going is stay positive, even if the only person I do this for is my daughter. My family is the most precious thing in the world to me after my health, and just because part of my health has been taken away, doesn't mean I can't cling onto and enjoy the parts of my life that remain the same. I guess I just need to toughen up a bit and keep going... no matter what. The alternative is facing the wall and giving up and I'm not quite ready for that, yet.

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    • Posted

      Good on you nikki27791 for doing everything you can, it's very inspiring, and I can relate to the personal struggle too, in my own way. Yeah, finding people who understand is huge and it's good when that can pan out. Birds of a feather should flock together, they say. Which is true.

      All the best. I believe your symtoms will heal over time.   

       

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