3:31am March 3, 2014

To understand this, understand what it used to take for me to be able to jump off the ground.

It had to be:

On a really good day
Holding onto a sturdy grab bar with all my might
I don’t think I got more than a centimeter off the ground
And it felt like I was lifting a giant sack of lead
And afterwards I would feel like hell

This wasn’t accounted for by my weight. Most 185-pound people can jump. Hell, most 245-pound people can jump and that’s the heaviest I’ve ever been. This was a combination of my neuromuscular problem and other stamina problems. And the Mestinon treating the neuromuscular problems wasn’t enough to solve the problem, or even close.

Add the Decadron, treating my abysmally low cortisol levels? I can do jumping jacks.

As in, I can do between five and ten jumping jacks. And while it gets my heart pumping, I don’t get out of breath, I don’t have to immediately rest for the entire day, I don’t get dizzy, I don’t get weak, and in fact I feel better for having done that.

This also confirms something I’ve known all along, but hearing society’s bias against disabled people 24/7 has made me sensitive to hearing this kind of crap: This has never been a matter of laziness. I’ve never avoided exercise just because I didn’t feel like exercising. I like exercise, in fact. It makes me feel good.

But over the years I’ve internalized the idea that if I just tried a little harder, I could do things like that. Think that’s weird? Connie Panzarino, a woman with severe spinal muscular atrophy who’s never been able to walk in her life, internalized this in early childhood and believed well into adolescence that she could really walk if she wanted to, and that one day she’d just get up and walk and surprise everyone. It was this ‘secret’ that she held inside her… until she was fifteen and she still wasn’t walking and she had to reevaluate. That’s how intense this kind of programming can be.

But now that I feel the difference on Decadron, it’s clear that my failure to do strenuous exercise has not been a choice. Because there’s no way that, before treatment, I could have possibly done what I’m doing, and felt like I feel now.

If I’d tried, my heart would have raced, I would have become dizzy, seriously short of breath, extremely weak, and possibly collapsed on the floor before I could get to bed.

I’m not sure what my limit is. I’m deliberately not getting near my limit. I started with five jumping jacks and worked my way up to ten. When I start feeling even remotely tired, I stop. But it feels so exhilarating to be able to do even the smallest amount of aerobic exercise after all this time being able to do absolutely nothing.

I don’t know how much I’ll be able to do. I don’t feel like I’ve been cured or anything. I just feel better than I felt. I always knew, deep down, that once I could safely do something like this, I would be doing it. That despite the messages I get right and left, I’m not the kind of person who avoids activity or work because I just don’t feel like it. I enjoy work, and I enjoy physical activity, and I always have.

I don’t think I’m going to be going jogging anytime soon. And I still have a lot of other problems that limit my ability to do things like this. But this is a major step forward, and it’s one I hadn’t been expecting.

I’d also gotten very used to being fragile. By fragile I mean, one good illness could put me in the hospital or worse. I mean hovering so close to negative spoons when it comes to stamina, that when I’m sick I sometimes can’t even type or move around in bed. I mean living with a constant awareness of my own mortality because when I’ve gotten sick enough, it felt like it took significant, exhausting effort for my body to go through all its basic internal functions, let alone move around and do stuff.

I feel different. I don’t know if I feel better enough, yet. I don’t know if this is the right dose. And this is obviously just a fix while we try to sort out what is going wrong with my pituitary gland. But it’s absolutely amazing. I feel stronger and sturdier and my stamina levels are astronomically high, at least compared to what they were before.