So I’m more or less officially physically disabled.
I was told in an appointment with a third different doctor that I got a birth defect on my lower spine which means that my nerve cord there is too tight. Which just means I have the back issues of a 40 year old. That with the inflamed nerves that take my ability to walk properly without crutches (and even with them it’s a struggle) will be forever. The only thing I can do is slow the symptoms down, do physical therapy and get pain meds to handle the symptoms.
Yesterday night I had a flare up again, to cut things short the pain was so bad that I dissociated multiple times for a couple minutes and that some choked down screams left my lips. Worst pain in my life so far. Solid 8 MAYBE 9 out of 10.
Now I have the symptoms I had at the very beginning again just less intense and a few new things mixed into it. Like period like cramps, feeling very feverish, my right arm feeling heavy and the constant sensation of somone trying to shove a metal pipe up the sole of my foot.
I checked yesterday if it was an emergency due to how brutal it was but it wasn’t. I could go on my tip toes but not walk on them, the ball of my foot was impossible and I could pee even though at the beginning it was hard to do so, felt like someone glued the urethra shut and I had to push harder than it should have.
Besides that the hot-cold sensation from my foot to knee calmed down, it sometimes still has the sensation of tiny ants walking around the area and there is a general numbness that isn’t the worst that I had before.
I’m mentally processing the whole thing more than before after the diagnosis. The realization that I’m physically disabled hits hard, and with how the symptoms are going I probably won’t be able to hold any job that I wanted to. I still hope that I can get a part time one in some capacity but things are looking grim. I probably need to quit the rehabilitation because they have NOTHING to accommodate physically disabled people except like a bigger bathroom with those handles you can hold to get up after a shit or pee.
In the area I life in there are like 3 main sources a (physically) disable person can go for a job or support and all of them are shit. One is a workshop that exploits disabled people of all kinds under the protection of the law (not even minimum wage being given to those people while getting full work hours of a laborious job and from second hand telling awful treatment of the disabled), an Evangelical supporter group (?) that has multiple different options but all of them require some sort of physical labor and then the third one I just managed to get away from because of how shit and heartless the workers and system is. I legit had meltdowns and breakdowns each time I got a letter from them with all their bullshit requirements and refusal to accept that certain things are just not possible and constant push of getting people away from the “support” they offer.
My boyfriend already assured me that worst case he earns enough for us both but he knows I don’t want to be dependent on someone’s income, or that I could try to work on my art and get money from that or do volunteer work if I really need to feeling of accomplishment.
I don’t know it’s just…Very hard to just get it through my head that this is my life now.
The good thing is I can add these issues when I need to re do my disabled ID card (idk how else it’s called), maybe I get a higher number and more support. And the possibility of getting a care level, I was hoping for a 2 but honestly I have no idea what to expect. I just know I can’t do basic house chores expect like putting clothes in the laundry and hanging them up and doing dishes while sitting (even those things are sometimes difficult).
Just out of curiosity and to feel better about it how did you people who became physically disabled handle it? The process of acceptance and what helped with the hurt and shame of the realization that possibly any dreams you may have had been crushed forever. Or hell, maybe how you guys found a way to still reach it.
