I've posted before on other health forums about my drug-induced movement disorder from antipsychotic drugs, tardive dyskinesia, following being prescribed meds for post concussion syndrome after my mild traumatic brain 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 movements and 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 silence 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 beautiful 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.