Or, why I’ve decided to apply for disability.
My health has improved in the past few months, since it started getting worse(r) at the beginning of the year. Much of my week to week, or month to month, life often seems to be taking two steps forward and one step back. (Or one step forward and two steps back.) It’s depressing and frustrating.
In the last month or so I reached an important milestone. I choose to think of it as a milestone. I stopped looking at how I feel compared to how I felt. (I need to make sure my neurologist understand this.) Instead, I’ve started (trying) to look forward. How do I feel compared to how I should feel to be able to do things like work full time, write a book, work in the yard again, or volunteer again.
Ignoring, for a moment, the unknown aspect of all my multiple health problems, I think it will be years before I can attempt many things in life that I used to take for granted — without much planning, preparation, and expectations of doing nothing but resting before or after. The unknown aspect of my health problems means that I don’t know if I’ll be staying in bed – or going back to bed – tomorrow until tomorrow.
The goal that I put first, after taking care of myself, is being able to write a book AND publish it. This is something I can do on my own schedule, around doctor appointments, migraines, and naps. This is not something that pays bills. If I was to go back to work full time, I’d lose access to doctors because I wouldn’t have the time to get to appointments. I’d also lose access to hobbies and increase my stress. All of these things would negatively affect my health by causing more issues with pain and fatigue – among other things. More pain means (more) narcotics. It would also mean I’m more likely to get sick. Getting sick means more doctor appointments and more medicine.
Regardless of what my long term goals happen to be, I now understand that I have to think in terms of years. Half a year, a whole year, two years, etc. Getting sick happened over years, not weeks or months. It’s going to take longer than that to improve my endurance and find my new normal. I’ll probably never be like how I was in graduate school. (That was only 3-4 years ago!)
This is not something that pays student loans or doctors or medical bills that are in collections. It all sounds scary, but at least I can look forward and think about the future now without panicking (much).