Bandmates are there to share work and ideas, but for Nyrobi, it’s all the more important that she has someone to rely on.
“I think I've been really fortunate in the way that I have my sister… She does a lot of the admin or the day-to-day work. For instance, yesterday, I was just out of it. I was so terribly ill, I didn't get any work done. I just slept the whole day. And it's really unpredictable like that,” she explains.
“I did so much work yesterday,” Chaya agrees. “So much work.”
Normally, Nyrobi spends a few hours in the morning and evening on all matters ALT BLK ERA, taking a break in the afternoon to rest.
“It's almost like we have to move around it… we have to plan knowing that my body fluctuates and it could be a bad day and it could be a good day. I think it's normal for us now,” Nyrobi says. She says having an access rider – a list of accessibility requirements, including not doing interviews before 11am – is “an absolute lifesaver”.
Prescription medication helps when it comes to performing live, too. “We like to go 100 per cent,” Nyrobi explains. “I don't want to be thinking about the chronic pain. I'd rather be thinking about the audience and the show and interacting.”
With chronic fatigue syndrome, pushing yourself to be physically or even mentally active can lead to a crash.
“For the first two years, I'd do a show, and then for three days I'd be out, and then it [would] slowly go down to two days, then one day, and now you might even see me the day after. I'll get up in the afternoon, for sure. I've just gotten so much better progressively,” Nyrobi says, thanking her mother’s advice of listening to her body.
“I think the biggest surprise for me was to go from not being disabled to being disabled all of a sudden,” she continues, reflecting on her former life playing rugby and earning a black belt in Taekwondo. “With my illness, it's really stripped away so much of my personality, because I used to be [into] music, drama and contact sports, I was really active, and suddenly I couldn't do any of the things I loved.”