Holy **** I'm sick
Does it ever just hit you out of left field that feeling "oh **** I am actually way worse then I realized!" Like I know I have been sick and my abilities are limited. It just hits me at random times how bad it actually is.
So like today I had to do an assessment for my Physical therapist and for an upcoming appointment with a new Dr and say how well I was doing balance wise and ability wise. The answers were not great. Along with getting some positive test results back that my Dr got back and scheduled an appointment that night so somethings up...
Then I started thinking about if I could get a job cus my parents where joking about my dad working at the new hobby lobby that just opened and realized I physically couldn't handle working at all maybe 2 hours a week max. No job would hire me at that and I would require acomidations so no way am I qualified for anything. As a young adult you want to work and do things on your own and realizing you can't because your body limits you so much is frustrating.
None of this information is new to me on the contrary I have been dealing with the decline of my independence since I was 17 (3 years now). It just hits me at different times and I go "oh ****" when you go from working full time and graduating high-school to being in a wheelchair struggling to speak or do basic tasks and no one knows why. The grief of the life you lost just hits at random moments. Most days I am ok and try to stick to my homework of pt, ot, cognitive, and speech therapy and if I have the energy I work on my comics or art if I don't, I don't and I go rest. I forget how much I have lost and how bad my body is.
Even with the diagnosises I have done explain all my symptoms and what is going on. The continuation of decline is frustrating. The constant questioning of if today will actually be better then the last but telling myself that tomorrow might be.
But man are those "oh ****" moments hard.
#oh **** #tics #nurologicaldisorders #FunctionalNeurologicalDisorder #Tourettes #dyskinesia #Dystonia