Sundown tonight marks the beginning of Passover. And today, from sunrise until sundown, is the traditional Fast of the First-Born. I’m a first-born, but as on every other fasting day, I’m having to skip it because of dysautonomia.
I’ve tried fasting on these holy days before, and to say that it’s extremely difficult is an understatement. Even when I would do the “limited fast” acceptable for those who are ill or who have medical conditions (like I do), I always needed two to three days afterward to recover. So I’m learning to practice a deeper form of mindfulness on these days — at least, that’s the idea. Wish me luck.
Every year I try to think of a current application for the lessons of Passover — the recent economic crisis gave me plenty of Passover fodder. This year, though, I’m thinking of looking hard — harder, I suppose — at how dysautonomia has in effect been holding me prisoner. I do already focus much more on the positive things in my life; without that optimism, I would be in a truly sorry state. But I keep coming up against the limitations imposed by this chronic illness, this dysfunction of the Autonomic Nervous System, and getting angry or discouraged (or even refocusing on the positive) isn’t changing anything.
But even with the consultation of specialists, following a careful management plan, and taking prescription medication to regulate the ANS, I’m nowhere near “normal.” Fatigue is my constant companion, or is at least lurking around the corner when I’m feeling momentarily energetic and spry. I’ve been plagued by the return of migraines in recent weeks, and I’ve been battling with other unpleasant, inconvenient, and downright painful symptoms. It’s a non-stop party of suck, even as I endeavor not to become what I’ve termed “a big lump of no-fun clay.”
I haven’t been resting in the shadows, however. I’ve been actively pushing myself, and there have been some decent gains even though overall it may feel more like taking two steps forward and then a half-dozen backward. I go far beyond the recommended weekly quota of 150 minutes of exercise, and I’m often engaging in more strenuous activity than was first advised by doctors. I’m still a young-ish woman and want to be active!
I’ve gone so far as to join a curling team — yes, I know, but the game is more difficult, nuanced, and vigorous than it looks, and there’s a lot of up-and-down to trigger orthostatic problems. But after each curling match, I’m effectively done for the day. I am in pain. I am at the mercy of heavy fatigue. I’ll have another couple of hours of consciousness left in me, but there’s little more I can do than take a quick shower and go to bed. I’m sorry to say this is not an exaggeration.
I’m still hopeful that all of this “pushing the envelope” will pay off in the long-run, even as I’m coming up against some hard and fast limitations due to dysautonomia. I’m looking for a short, simple word to use besides “sick” or “ill” to describe what’s going on with me when someone asks. I don’t want to always be thinking of myself as “sick.” This is not a cold or a flu, or even a norovirus. This is not temporary, and it’s certainly not contagious. Maybe “compromised”?
Yesterday, I told one of the members of my curling team about my dysautonomia. I’d been holding out because I didn’t want to be treated differently or to be viewed as a liability. But after struggling through five games and nearly passing out a few times — I’ve seen stars during games and have frequently experienced tunneling vision — I figured it would be better to tell someone. Now, if I pass out, maybe they won’t freak out as much.
I want to be good at curling, but it’s really hard with this particular chronic illness. I’ll see what kind of cross-training (besides yoga and power-walking) I can do to try to build up tolerance, but it may not be possible.
So this is what is on my mind during this particular Fast of the First-Born. If you’re fasting today or are observing Lent or practicing your own form of mindfulness, I hope your time is easy and rewarding.
Creative Commons photo: Curling, by Peter Miller.