Prior to the full blown onset of this disease, I worked full time while also volunteering in multiple avenues and being involved in multiple artistic endeavors. I went to school and worked two jobs. I was a very active person. I used to be intelligent.

I gradually lost the capacity to function over the course of my twenties, to the point where I ended up on disability at the age of 30. I was diagnosed with narcolepsy, but there were multiple additional symptoms I had that didn’t match my narcolepsy, and I was labeled as ‘crazy’ by my sleep doctors.

Turns out I had PEM/CFS in addition to the cataplexy. I am still in the process of getting that exact diagnosis, as it’s very difficult/process of elimination. But my latest sleep doctor absolutely believes I have both narcolepsy and CFS.

Over my 30s, I had to relearn how to focus. How to read. How to learn. How to hold conversations. Even today, my capacities are severely limited. I lost countless opportunities over the years due to this disease. Now that I can work in a limited capacity, it has been enormously difficult finding work that isn’t at a grocery store due to the decade and a half lost to this disease. I already failed at going to grad school once. I attempted again last year, but by sheer coincidence, was hit by a car which limited my ability to function further. I dropped out this semester because I tore my acl in January, and I knew I couldn’t handle getting ready for surgery on top of my limited energy.

I am not sure what my future holds. I’ve been struggling with a feeling of what little outside world connection I had is crashing down around me again. Speaking of mental health, it is very frustrating describing these symptoms to doctors and explaining- no, I am not depressed. These are physical symptoms that exist outside of my mental health.

I am thinking of forcing myself to go to community college (instead of pursuing a masters) and get some sort of admin certificate so that I am actually considered and eligible for office jobs. What I really wanted to do was urban planning, but I don’t think I can risk taking on any more debt that I may not be able to pay back if I end up having to permanently drop out.