Too tired to live: A B.C. woman’s struggle with chronic fatigue syndrome

Tashia Weeks wants to get the word out about the disease

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.”



tyler.harper@nelsonstar.com

Like us on Facebook and follow us on Twitter

Get local stories you won't find anywhere else right to your inbox.
Sign up here

 

Blewett’s Tashia Weeks suffers from myalgic encephalomyelitis, a disease that brings about severe fatigue and several other life-altering symptoms. Photo: Tyler Harper

Just Posted

A second wave of COVID-19 is probable, if history tells us anything

B.C.’s top doctor says that what health officials have learned this round will guide response in future

Canfor announces permanent closure of Isle Pierre Mill

The company also announced curtailments at their pulp mills in Prince George.

COVID-19 and returning to safe operation

WorkSafeBC recognizes the importance of worker safety as businesses look to resume… Continue reading

Local governments receiving provincial grants

Meant for infrastructure projects and planning

Kelowna man charged with harming a hamster

The 20-year-old Kelowna man faces several animal cruelty charges

High tech fish transport system set up to ‘whoosh’ salmon past Big Bar landslide

Fish will spend roughly 20 seconds inside the system, moving at roughly 20 metres per second

Trudeau to seek 10 days of paid sick leave for Canadian workers, says talks are ongoing

Paid sick leave is key to keeping COVID-19 spread under control, prime minister says

Snowbirds jets will not be leaving Kamloops, just yet

The Snowbirds have been in Kamloops since May 17 when a plane crashed killing Capt. Jennifer Casey

Introducing the West Coast Traveller: A voyage of the mind

Top armchair travel content for Alaska, Yukon, BC, Alberta, Washington, Oregon and California!

COVID-19 checkpoints ‘up to them,’ Bonnie Henry says of remote B.C. villages

Support local tourism economy, but only if you’re invited in

Still a lot of work to do to fully connect regional district

Draft strategy shows dependence on on single fibre optic cable route, poor cellular service on roads

Vancouver Island hasn’t seen a new homegrown case of COVID-19 in two weeks

Island’s low and steady transmission rate chalked up to several factors

Most Read