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

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

Too tired to live: A Blewett woman’s struggle with myalgic encephalomyelitis

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

 

Too tired to live: A Blewett woman’s struggle with myalgic encephalomyelitis

Just Posted

Tala MacDonald, a 17-year-old student at Mount Sentinel Secondary who is also a volunteer firefighter, has won the $100,000 Loran Scholarship. Photo: Submitted
West Kootenay student wins $100K scholarship

Tala MacDonald is one of 30 Canadians to receive the Loran Scholarship

Elvira D’Angelo, 92, waits to receive her COVID-19 vaccination shot at a clinic in Montreal, Sunday, March 7, 2021, as the COVID-19 pandemic continues in Canada and around the world. THE CANADIAN PRESS/Graham Hughes
110 new cases of COVID-19 in Interior Health

Provincial health officers announced 1,005 new cases throughout B.C.

Kristian Camero and Jessica Wood, seen here, co-own The Black Cauldron with Stephen Barton. The new Nelson restaurant opened earlier this month while indoor dining is restricted by the province. Photo: Tyler Harper
A restaurant opens in Nelson, and no one is allowed inside

The Black Cauldron opened while indoor dining is restricted in B.C.

These two city-owned houses on Railway Avenue in the Railtown district will be sold. Photo: Bill Metcalfe
City of Nelson will sell two derelict houses in Railtown

Purchasers will be responsible for demolition and slope stability issues

First-year Selkirk College student Terra-Mae Box is one of many talented writers who will read their work at the Black Bear Review’s annual (virtual) launch on April 22. Photo: Submitted
Rainbow trouts thrashing with life as they’re about to be transferred to the largest lake of their lives, even though it’s pretty small. These rainbows have a blue tinge because they matched the blue of their hatchery pen, but soon they’ll take on the green-browns of their new home at Lookout Lake. (Zoe Ducklow/News Staff)
VIDEO: B.C. lake stocked with hatchery trout to delight of a seniors fishing club

The Cherish Trout Scouts made plans to come back fishing soon

Cannabis bought in British Columbia (Ashley Wadhwani/Black Press Media)
Is it time to start thinking about greener ways to package cannabis?

Packaging suppliers are still figuring eco-friendly and affordable packaging options that fit the mandates of Cannabis Regulations

(Police handout/Kamloops RCMP)
B.C. man dies in custody awaiting trial for Valentine’s Day robbery, kidnapping spree

Robert James Rennie, who was on the Kamloops RCMP’s most wanted list, passed away at the North Fraser Pretrial Centre in Coquitlam

Photos of Vancouver Canucks players are pictured outside the closed box office of Rogers Arena in downtown Vancouver Thursday, April 8, 2021. THE CANADIAN PRESS/Jonathan Hayward
Canucks games against Leafs postponed as team returns from COVID-19

The team has had 11 games postponed since an outbreak late last month

Danita Bilozaze and her daughter Dani in Comox. Photo by Karen McKinnon
Island woman makes historic name change for truth and reconciliation

Becomes first person in Canada to be issued new passport under the TRC Calls to Action

Royal Inland Hospital in Kamloops. (Dave Eagles/Kamloops This Week file photo)
RCMP intercept vehicle fleeing with infant taken from Kamloops hospital

The baby was at the hospital receiving life-saving care

Vancouver Police Const. Deepak Sood is under review by the Independent Investigations Office of B.C. after making comments to a harm reduction advocate Sunday, April 11. (Screen grab)
VIDEO: Vancouver officer convicted of uttering threats under watchdog review again

Const. Deepak Sood was recorded Sunday saying ‘I’ll smack you’ and ‘go back to selling drugs’ to a harm reduction advocate

Provincial health officer Dr. Bonnie Henry prepares a daily update on the coronavirus pandemic, April 21, 2020. (B.C. Government)
B.C.’s COVID-19 infection rate persists, 1,005 new cases Friday

Hospitalization up to 425, six more virus-related deaths

Premier John Horgan receives a dose of the AstraZeneca COVID-19 vaccine at the pharmacy in James Bay Thrifty’s Foods in Victoria, B.C., on Friday, April 16, 2021. THE CANADIAN PRESS/Chad Hipolito
B.C. Premier John Horgan gets AstraZeneca shot, encourages others

27% of residents in B.C. have now been vaccinated against COVID-19

Most Read