Diagnosed 2015 with demyilating disease . Its been a long road and lots of missed time. Ive been laid off/let go from 4 jobs since then. I feel like theres a target on my head. When I get sick, it brings on a flare and then flurry of appointments. I often disappear into a supply closet and break down at work , then compose myself before going back to my desk.
Ms hug has been terrible lately amongst many other transient symptoms.
Over the last decade, I have used almost all vacation days for medical appointments , tests, mris etc. My neurologist is out of town and I have to commute 1.5 hours to get there.
I started a new job last year and really excelled , impressed management and pulled off some large projects with tight deadlines. Ended up with pneumonia in march and it brought on a bad flare. I was transparent with my employer and said I may need some time to go to neuro and dr apts on short notice. Ive also missed 3 sick days since then with pneumonia and ms hug.
I noticed conversations are shorter, and weirder with management. A vibe shift. The same one I always get prior to being let go. Im really sick of this cycle, and really feel my usefulness to this world is through.
Am I alone here? Anyone else going through this? I was written off as disabled by my GP but I pushed myself incredibly hard with PT to make myself mobile and working.