The struggles with physical and mental illness
It all started, when I turned 16. I was sleeping a lot, feeling extremely fatigued. It took me a few years to get to tell anyone, how severely this affected me. Of course, I also developed the schizoaffective disorder, which took 6 years to get diagnosed and treated. I thought, that I should be feeling better. That was all a side effect of my mental health condition. But medication worked, I was stable. The fatigue not. Then in February 2021, I suddenly developed tics and paralysis in my legs. Lots of doctor's visits showed, that I was suffering from FND - a functional neurological disorder. A condition that affects the brain, as if it was a computer, and the software is wonky, though the hardware stays intact. Non-epileptic seizures started following, me losing my speech. My mother was freaking out and so was I. My GP suggested trying and go into a psychiatric hospital to get a lumbar punction done. We agreed because we were grasping at straws. However, I received a lot of mistreatment. The nurses there, accused me of faking and overexaggerating, just because they weren't familiar with FND and because my symptoms tend to come and go, as they wish. They also threatened to take away my crutches. But I informed them, that this is illegal, and so they stopped. Here in Germany, they are also pretty behind on new research, which suggests it is a functional neurological condition, rather than a psychiatric condition. I developed functional blindness at one point. The nurses were incredibly rude. Telling me, that I can see and that I shouldn't act this way. They also did that when I lost my voice completely. With FND, oftentimes with functional voice loss, you can still sing and even speak in another language, but nothing in your mother tongue. The doctors treated me like I was acting as well. It was a horrible time. I still haven't gotten ANY appropriate treatment for my FND and rely a lot on crutches, my wheelchair, and walking canes. My fatigue through all of this has stayed pretty much the same, though over the past 4 weeks I've seen a sharp decline. I can barely do any mundane take, without needing a long break afterward. My irritable bowel is getting worse again and I have noise sensitivity, headaches, and overall body pain. As well as weak legs, brain fog, PEM (post-exercise malaise), which means that you are crashing hard after doing a task, that is either mentally or physically challenging - the task, that can cause this, can vary from person to person- and need from up to hours to days or weeks to fully recover. Sometimes even the smallest things are too much for me, like showering or even brushing my teeth. I saw a neurologist and all she said, was that my psychiatrist needs to check my medication. I had written out everything about my M.E. symptoms on a sheet, even the one stating, that I had the symptoms at the age of 16 and that I had only started taking psychiatric medication at the age of 19. So I am still in limbo about the M.E. However everything has been checked. Blood, urine, lumbar puncture, MRI, CT scan. And normally M.E. is, for now, a diagnosis of exclusion. I want to share my story so that there will be some awareness about the mistreatment of patients, let it be of patients that are suffering from a psychiatric condition and everything is being put to that, or the mistreatment of patients with FND and the lack of research. This needs to change!
