So like a lot of people with spinal cord injury I have chronic constant nerve pain and, I manage that quite well. But on top of that unlike most spinal cord injuries I also have frequent uncontrollable autonomic dysreflexia and extremely violent and constant spasticity and reactionary spasms (yes both). This is a daily thing, and all of it continued to progressively get worse the more chronic my injury becomes for whatever reason.
So the last year has been real bad every time I do bowel care, or if the slightest little bit of urine comes out of the penis, and in fact for reasons we can't identify as of yet and (even if I fart although it's pretty minor and quick AD) I go severely dysreflexia my blood pressure goes from a usual low of 90/60 to anywhere around 200/110. Of course my spasticity goes absolutely ballistic when this happens, as most of us know dysreflexia is also quite painful especially when it lasts for a couple hours you get really agitated ( considering how apparently life-threatening it is and how often I go through it I'd say I handle it pretty well, but sometimes I get real ugly) but the spasticity doesn't need dysreflexia to be bad some days they're just relentless for any number of reasons. Despite them being so bad I've done everything in my power to tough them out and stay away from the medication as not only do these meds in the recovery they also ruined eligibility for clinical trials. But they've gotten so violent and so bad that I have to strap my legs down to my wheelchair and I have to wear metal braces in bed anyways two months ago they caused very bad bedsores on my legs seven or eight stage twos maybe one or two being stage III's. So desperate times call for desperate measures I'm now on 80 mg of baclofen and 10 mg soon to be 15 mg of diazpam of course I feel like shit all the time, I feel tired their side effects and it's been a while since I started the dosage. And although there's been a definite reduction the spasms are still very bad, I still sweat profusely at random and go dysreflexia throughout the day. Anyways to my main point
Sometimes when I'm dripping sweat, nerve pain coursing through my body especially my feet, spasms throwing me around in my bed and dysreflexia causing all kinds of awful; I get really agitated, I swear I skip mannerisms and just make demands to hopefully help the situation, I yell etc. Lately caregivers whether they are parents, CCAC, hospital staff etc. have been saying things like "calm down" "there's no need to swear", "Stop" etc this is becoming beyond infuriating!! I make it perfectly clear that I'm not swearing at them, I'm yelling and swearing in frustration and/or agony plain and simple. But they still whining bitch about The words I'm saying and the volume of my voice ( after well over a year of this, I can't help but wish that my problems could be so trivial).
Today during my bandage change, the spasms were really giving me a go my bed was literally vibrating. Anyways every now and then I was saying "fuck" or "for god sakes", so my mom for whatever reason is all flustered and anytime I swear takes it personal as if I'm swearing at her and doesn't realize I'm just yelling in agony but the CCAC nurse sees what's happening and goes "there's no need to swear "all calmly. So I'm literally having a seizure throughout my entire body hands, legs, stomach etc. clenching my teeth and I say as politely as possible "this ever happened to you" her response "I have had leg cramps" *mic drop* Somebody get the fucking violin!