*Trigger warning:* If your trajectory is progressive, especially if severe you really shouldn't read this.(Writing it messed me up)
The thing about becoming progressively worse over 12 years: it's terrifying. I can feel a pretty horrible end bearing down on me. So I try to prepare and be careful and judicious with my resources. Experimenting with treatment, visiting with people, expending mental and physical energy: it all needs to have a good chance of being beneficial, successful or enjoyable.
Every once in a while, in a moment of feeling semi-relatively okay and doing something I don't often do in my post-illness world (Tonight it was walking across my room in my underware.) I catch myself feeling like me again. For a fleeting instant. In these moments I try not to think about the fact that every time I do something I might be doing it for the last time. When I was well enough to drive occasionally, I'd feel this way behind the wheel. But it's been three years. Things have gone downhill significantly.
I work really hard at holding the line, trying not to slip to a lower level of functioning. But one has to live. And sometimes the desire to feel alive overwhelms all good sense. And I falter. And I crash. And sometimes I don't get better. Maybe this is the key to my worsening over time. I try not to go down that road of blame and doubt. I think I'm fairly conservative about my limits, as PwMEs go. I try to grab what I can and do it as long as I can. Maybe I don't give things up soon enough.
But then, as I'm getting worse anyway, it becomes a question of how much I'm willing to let this illness take from me in the hopes that I may bargain with my behavior. I'm up against the pressure of "if not now, never." But, on the flip side, I can't sleep without medication and I need to keep myself well enough to go to the doctor for as long as I can. (What happens after that I don't even want to think about.) So I try to strike a balance between not doing things that make me sicker and doing them before I lose chance to do them at all.
Maybe some night soon I'll sneak out and drive around the block.