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.
含羞草研究社淚f I含羞草研究社檓 out of bed, I am suffering,含羞草研究社� 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含羞草研究社檚 no accurate way of diagnosing ME, its causes remain unknown, and there含羞草研究社檚 no treatment.
It has also destroyed Weeks含羞草研究社� 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含羞草研究社檛 move.
含羞草研究社淚 never would have imagined in a million years that day when it all fell apart,含羞草研究社� she says. 含羞草研究社淚t was a day that changed my life.含羞草研究社�
In the weeks after, the symptoms worsened. She lost feeling in her hands and right foot, which means she can含羞草研究社檛 drive. But she couldn含羞草研究社檛 go outside even if she wanted to.
含羞草研究社淲hen I tried to go out, a fly would fly by me and I would be flinching. I couldn含羞草研究社檛 talk to you, I couldn含羞草研究社檛 make sense. I would try to read my son a book and feel like I had a stroke or something.含羞草研究社�
Weeks discovered the documentary , a film about a woman living with ME, and a physician diagnosed her (to the best of their ability) with ME in November. She含羞草研究社檚 mostly been bedridden ever since.
Weeks says she isn含羞草研究社檛 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.
含羞草研究社淗e含羞草研究社檚 very stressed since this happened,含羞草研究社� says Weeks, who is a single parent. 含羞草研究社淚含羞草研究社檒l be like, I wish I could do this and he含羞草研究社檒l say, 含羞草研究社榊ou含羞草研究社檙e perfect just how you are. You含羞草研究社檙e still the best mom.含羞草研究社� He含羞草研究社檚 trying to make me feel better, but I know he含羞草研究社檚 been stressed and more [confrontational] and upset about little things.含羞草研究社�
Despite the mystery surrounding the disease, Weeks said there is recent reason to be optimistic.
A 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含羞草研究社檚 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.
含羞草研究社淢E 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,含羞草研究社� said Nacul.
But that could also be years away. For now, Weeks just wants to get the word out about the 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.
含羞草研究社淚 just want to be a good mom again. It含羞草研究社檚 really important to me.含羞草研究社�
tyler.harper@nelsonstar.com
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