Me being a fairly typical card-carrying Type A personality, I handle illness pretty much the same way I handle everything else: badly, and with a to-do list.
Since slowly grinding to a halt and an eventual diagnosis last February, myasthenia gravis (MG) has been my constant companion.
It’s the sort of houseguest who never leaves, hogs the energy supply, and occasionally hides my muscles — the things responsible for doing stuff, like breathing, eating, swallowing, moving, lifting and generally navigating life.
After the best part of a year of reviews, treatment tweaks, scans, MRIs and regular visits to Dracula, who always wants a bit more blood than I’m willing to spare, I’d had enough of being cooped up. There’s only so much boredom I can take; it was time to test some limits.
So we did what any sensible person would do and returned to the scene of the crime.
We were volunteer camp hosts for Parks and Wildlife when MG first struck, so we figured we’d trial that with a toe in the water. The plan was to get outdoors for a month, take on some light physical work, with a daily dose of sustained effort and see how if I can handle it.
Think of it as a science experiment where I’m the lab rat, the lab technician and the one complaining about the results.
The real handbrake is the medication merry-go-round. The plan is to taper off prednisolone, which works wonders but is rough on the body long term, and swap it for longer-term meds with their own little list in the fine print.
Prednisolone brings fat redistribution including moon face; it shifts fat storage toward the face, belly, and upper back. It can also raise blood sugar and cause muscle loss, which makes the weight shift worse.
That alternative treatment fine print includes a higher chance of melanomas and lymphoma, which isn’t exactly the bedtime reading I’d choose. But the menu is short, so I’m ordering the least worst option and keeping an eye on the specials.
Despite all that, and legs that feel filled with lead, it’s gone well. With Kay’s constant support, and previous camp hosts Geoff and Judy offering often to back up, even better than well. I’ve gone from virtually bugger-all steps a day to an average of 5,587. That might not sound like much to a fit person, but I’m counting every one of them like it’s a gold medal event.
MG wanted to limit my life. I’m trying to limit its say in it. Barring serious flares or adverse reactions, one lead-legged step at a time, 2027, here we come.
Fingers and all other functioning extremities crossed.
Leave a Comment