About five years ago, my body started to succumb to the dysautonomia that I believe I've had since I was 16. This was worsened by the recovery from an appendectomy; it was that slowed recovery that finally got the right attention and my diagnosis. The damage had been done at that point. My endurance was gone, my strength was inconsistent, my fatigue was horrible. Since starting treatment a couple years ago, I've slowly been working back to my preferred level of activity.
I think you've noticed that level is high.
This eight month quarantine has given me an opportunity to take a leap forward in my progress. Before the quarantine, most of my energy was spent traveling from place to place; having most of my meetings and appointments through video now gives me more time.
It started at the end of March with a threat to challenge one of my mamas to a race with our walkers. I made it around the corner and back.. not quite a quarter mile. I started riding my bike again just to make it a couple miles to the trail to see the water, then rest and ride home. As the trails became a little less crowded and I felt safe to, I even started to take my racing wheelchair out for a 5K when I could.
That all worked and my stubborn came out... I set a goal to do something each day, then at least 30 minutes each day, and I'm currently gunning for 45 minutes and more specific goals. I'm walking with a cane and a leg brace now and just made it to 2 miles. I accidentally rode over 10 miles for a fun Halloween neighborhood trail of six stops with spooky stories... by accidentally, I mean I didn't know how far it would take me, but I figured I'd be close enough to my house to ride home and switch to my car if I needed to; I just had one more stop when I did stop at home for a quick recharge and decided to go for it. And I've been out with my racing wheelchair more in the last eight months than I have in the last few years; I haven't gotten much faster or gone much farther, but I'm getting out there and that's more than I can say I used to do.
At this point, I find I'm less afraid to try things or to make plans. I'm more confident about walking and staying upright; I still walk like a drunk pirate, but I'm used to it. I also surprise everyone at rowing by standing up on the dock by myself, or pushing my wheelchair for a few steps.. my foot drop is unfortunately becoming more pronounced with the walking though (my AFO brace is on the shoes I don't wear to rowing). It really says something about my progress that even though my balance or my leg haven't improved, my endurance and fatigue have vastly improved, and with them my mindset has changed. I can do this.
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