A good day for Tashia Weeks is one when she can get a little sun on her face, or perhaps walk around her home without feeling dizzy.
She might be able to hold a conversation with her seven-year-old son, and maybe do a few light chores.
But those days are few and far between.
“If I’m out of bed, I am suffering,” she says.
Weeks, 45, suffers from myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. Little is known about the disease, which causes severe fatigue, sleep dysfunction, headaches, sensitivity to lights and sounds and a slowing of cognitive functions that include concentration lapses and short-term memory loss.
The disease affects over half a million adult Canadians, the majority of whom are women, according to the Public Health Agency of Canada.
But there’s no accurate way of diagnosing ME, its causes remain unknown, and there’s no treatment.
It has also destroyed Weeks’ life.
The Blewett resident grew up in Penticton and moved to Nelson 15 years ago. She worked as an infant development consultant at Kootenay Family Place, and was a dancer in her spare time.
But three years ago Weeks began to feel different. She would get heart palpitations, or become confused in places with bright lights such as grocery stores. And, of course, she was tired all the time.
Then last August, on a trip to Salt Spring Island, Weeks was suffering from migraines as she prepared for the return home. She felt off balance, as though she were on a boat. At breakfast she decided on going to the hospital, but when she stood up her legs wouldn’t move.
“I never would have imagined in a million years that day when it all fell apart,” she says. “It was a day that changed my life.”
In the weeks after, the symptoms worsened. She lost feeling in her hands and right foot, which means she can’t drive. But she couldn’t go outside even if she wanted to.
“When I tried to go out, a fly would fly by me and I would be flinching. I couldn’t talk to you, I couldn’t make sense. I would try to read my son a book and feel like I had a stroke or something.”
Weeks discovered the documentary Unrest, a film about a woman living with ME, and a physician diagnosed her (to the best of their ability) with ME in November. She’s mostly been bedridden ever since.
Weeks says she isn’t eligible for home care because she can still bathe and dress herself, and she relies on friends for help. One of her symptoms is orthostatic intolerance, which means her nervous system is negatively affected whenever Weeks stands.
Being upright also causes her heart rate to climb by 40 beats per minute.
The disease has also hurt her relationship with her son.
“He’s very stressed since this happened,” says Weeks, who is a single parent. “I’ll be like, I wish I could do this and he’ll say, ‘You’re perfect just how you are. You’re still the best mom.’ He’s trying to make me feel better, but I know he’s been stressed and more [confrontational] and upset about little things.”
Despite the mystery surrounding the disease, Weeks said there is recent reason to be optimistic.
A study released by the Stanford University School of Medicine in California last month revealed a new blood test that can accurately identify the disease based on how immune cells respond to stress. If successful, the diagnostic test could eventually lead to drug development.
Luis Nacul, the medical director and research director of the Complex Chronic Diseases Program at B.C. Women’s Hospital, told the Star in an email that ME research is still in its infancy.
The Canadian Institute of Health Research has started a grant to encourage an ME research network, but Nacul said more is needed.
“ME is a very real and serious disease, and those with the disease have been waiting for far too long for more research and more understanding of what is causing their symptoms and how we can best treat them,” said Nacul.
But that could also be years away. For now, Weeks just wants to get the word out about the Millions Missing day of action Wednesday, when protesters plan to advocate at the provincial legislature in Victoria for improved care.
Her days of dancing, and life as she once knew it, appear to be behind her. All Weeks wants now is the strength to take care of her son.
“I just want to be a good mom again. It’s really important to me.”