Retrospective Lily

After taking the new medicine called Skyclarys for Friedreich’s Ataxia for a little over one month, I can share some updates and observations. Like the condition itself, these meds affect each patient differently, and our experiences all vary.

I haven’t noticed any changes to my balance and coordination, two major things impaired by my disease. But my lack of mobility and terrible dexterity didn’t develop overnight, and I expect it could take several months if not longer to see real improvements there.

There are no changes to my eyesight, hearing, heart health, or other miscellaneous things affected by FA.

The main changes I’ve seen relate to my energy levels. FA causes chronic fatigue, and though it helps that I’m a peppy extrovert, fatigue does set in fairly easily. It’s hard for me to do a full day of activities without getting worn out. I couldn’t handle the life of many people my age (30) who work fulltime, maintain a home and do chores, and care for children and/or pets.

Now, I’m experiencing high highs and low lows.

Especially when I’m well-rested and I pace myself, my energy level is higher than it was on a typical day beforehand. This makes transfers and the small tasks of daily living easier, since I can put more “oomph” into everything.

When I’m not well-rested and don’t pace myself, my fatigue tends to be worse than it was beforehand. I get so tired I could close my eyes and fall asleep on the spot; I’ve taken more naps in the last month than usual.

More energy means louder and clearer speech (apparently). By luck of the draw, my speech has always been good for an FA’er – at least passable enough to make phone calls for my parttime job and teach church-related classes. But several people have commented that my speech has improved. However, when I get tired, my voice feels weak and strained – and this happens more than it used to.

You know how little kids will run you ragged for hours, then get so tired they fall asleep in Grandma’s arms, on the floor, laying upside down in a chair? I feel like that. A ball of energy, then a puddle of exhaustion.

And the cycles aren’t always predictable. Sometimes, I go, go, go all day and don’t feel fatigued at all. Occasionally, I feel kinda ‘bleh’ all day.

Maybe the roller coaster effect results from my body still adjusting to the medicine. I’m eager to see how things unfold as time passes. As always, I covet your prayers.